Let's Add Some Purple.... Why Not?

 Teal, Pink, and now some Purple added to my ribbon collection.  Definitely not the kind of collection I would wish upon anyone, but someone's gotta take it on huh?  So I guess that's me in the great world of statistics.  I get to be the 1 in ....  whatever number each of those ribbons represents.  I've finally quit asking why me, because there just isn't an explanation anyone can give.  Instead I've accepted this is my fate and my path and realize it is all out of my hands and what will be, will be.  

It has taken me almost a month to update and actually put these words into writing.  I'm pretty sure I'm still actually in shock, but each day it becomes more of a reality and I think I'm finally ready to at least make it official and to vent a little bit.  This is the first step of my acceptance of what is surely to be my final battle with the ugly "C" word.  I have to wonder why they make pancreatic cancer a pretty color like purple?  Although honestly I've never liked purple.  Probably has something to do with a little PTSD from the hours upon hours of non-stop Barney cartoons when Britton was a little guy.  Oh Lord I could recite every word to every Barney episode there was back in the day LOL  Anyways, I think the pancreatic ribbon should be coal black.  It is the most aggressive awful cancer with no chance of a cure.  Most of the other cancers out there you have a little bit of a shot of possibly getting better, but when the doctor utters the words pancreatic cancer, statistics say you have been given a death sentence.  And thus far, I haven't read or heard many stories to the contrary.  

Most of you know, along with battling breast cancer over the last 3 years, for the last 2.5 of those years I have also battled what, at the time, was told to me was chronic pancreatitis.  From my first attack in July of 2018, I have never felt that they had this diagnosis right.  Something was off.  But with trying to battle through the breast cancers and dealing with the loss of my fiance leaving me, I put this feeling on the back burner.  I did, however, seek out what I thought through all of my research, was a top pancreas doctor in Missouri who also dealt with BRCA genes.  I felt very lucky I was able to get into him and put my full trust and faith in this man to treat me very aggressively and closely since BRCA has a high risk for pancreatic cancer also.  I have had many MRI's in STL and they have always been the same diagnosis.... chronic pancreatitis, nothing more.  This specialist was supposed to be watching and taking care of me.  And I didn't ever question him.  This is where I went wrong.  I should have pushed harder, sought out other opinions, made sure he was following through.  I did none of this because I put my faith in this man to do his job, that he did not do.  His name is Dr. Jason Taylor and please do not ever see this man, as I believe he is the cause of what will surely eventually be my demise.  

In September I had another acute pancreatitis attack and could not get into my STL doctor.  Desperate for more answers I made an appointment with a GI doctor I had seen before here in Columbia.  I got an appointment 2 weeks later.   He immediately ordered an EUS scope and colonoscopy, things the STL doctor should have done a year ago, as there had been a mass in my pancreas for at least that long, which had shown on all of the MRI's the Columbia doctor received from STL.  I went in on the 30th of October for my EUS scope.  During this procedure they put a scope down your throat to view the back side of the pancreas.  Then if need be, they do what is called an ECRP, which is a more detailed scan of the pancreas.  And if they see something suspicious, they then attach a needle to the scope and go through your stomach from the inside and into your pancreas and take a biopsy of the suspicious area.  Unfortunately this is the procedural route that was taken with me that day.  When I woke up from the procedure, Dr. Halsey was standing over my bed with a look I'd seen before and I knew before he even spoke what was suspected.  He told me had to do the ECRP and took a biopsy and it did not look good.  Believed it would come back as cancer.  I could not believe it.  This doctor in STL that was supposed to be the best, that was supposed to be watching me so very close, had never, not once indicated anything remotely resembling what he thought was cancer, even though each time I saw him I asked him, "so you do not think I should be worried that anything could be cancerous".  His answer was always no.  I should have pushed harder.  I should have sought other opinions.  So for the next 3 days I prayed and prayed thinking there is no way this could be cancer, the "specialist" told me no way.  But I received the call and was told that it was pancreatic cancer and immediately had an appointment with my oncologist and a pancreatic oncology surgeon, as they thought if it had not spread I would be a good candidate for surgery to remove the tail of my pancreas and spleen and we would just move on with our life.  So not a great prognosis, but at that time at least a cure.  The big thing is that it HAD to not have spread, which we were all very positive and hopeful because the idiot in STL had just done an MRI in August.... YES August, and there were no indications of cancer anywhere else at that time.  So I went in for an MRI, CT scan and oncologist visit that next Friday, feeling pretty good that they would find nothing else, since my MRI in August had been clear.  Unfortunately the news was awful and it had indeed spread to my liver over those short 3 months.  Again, just 3 short months before folks, I could have been saved, had this "specialist", the best, would have questioned what was clearly a mass in my pancreas on the MRI in August!!!  Three months....  So that was when the words, which still ring in my ears, that I am still pretty sure I am in partial denial about, were spoken.  Terminal.  3-6 months.  We put a game plan together and I was to get a PET scan to make sure that it had not spread anywhere else and would start chemo that same day as the PET scan which was the next Wednesday.  

Wednesday came and the PET scan was done and unfortunately it showed a few more spots than just the one on my liver.  But thank goodness no where else.  A very small victory, but a victory none the less.  Then over to the chemo room to begin a new regimine of chemo.  This chemo, as I was told by my oncologist, is so toxic that just the toxicity sometimes kills patients, some patients actually shit themselves to death, and some patients just cannot tolerate it or it just does not work at all on the tumors.  So we started off with our first round at half dose, just to make sure I wasn't allergic and could tolerate the half dose before going all in.  The first 4 chemos are given at the center and this process takes 6 hours.  Thanks to covid, we are there alone as you cannot have someone with you right now.  6 hours is a long time to be in a chemo chair alone.  Then the 5th chemo is given through a machine and pump hooked up to your port in which you wear home and for 48 hours it pumps that chemo into you.  Then two days later you go back to have it removed.  This is when I got pretty sick and felt pretty awful for about 5 days.  But today I am feeling pretty good and in fact the last two days I felt well enough to take my beautiful babies to the park and let them run and just enjoy watching their joy at mom feeling well enough to be at the park with her and enjoying the beautiful weather. I was only for 30 minutes, but a small victory these days.  These days I will cherish.  

Wednesday I will go for my second dose of the new chemo at full force.  Not gonna lie pretty nervous and scared.  Happy Thanksgiving to me huh?  haha....  Praying for little side effects! Wednesday I will also meet my new oncologist as my current one who has been with me through all of my journeys thus far is retiring and his last day is Tuesday.  I am devastated.  He was the best and most caring and I am going to miss him greatly and my oncology nurse, who also left, greatly.  I am praying for a good match and that I love my new one just as much! I am also praying this new oncologist will fight with me and know that I am not willing to accept the words 3-6.  And I am going to fight like hell and I am going to need someone who is willing to go into this battle with me to do so and help me navigate all options to be able to fight.  Because 3-6 just doesn't work for me! 

This morning I prayed harder than I've ever prayed, for at least one year.  One year to get to see each season one more time.  One year to take in everything in a new and more observant view of what is important.  One more year to bond with people and nature and to just embrace every moment.  One year to see a sunset on the beach one  more time.  Because 3-6 just isn't acceptable! 

So there you have it.  I've put it in writing.  It's now real and my first step to acceptance.  

I would ask for anyone and everyone to please pray that same prayer for me, add me to prayer chains, church lists, and share my story.  Please, please, if you feel like something isn't quite right listen to your body and fight like hell to make these doctors listen to you.  Keep looking until you find one that will.  I wish that I had!