Well, this update is being done much quicker than is typical for me, but things have changed and I wanted to get a quick update posted.  At Curt's last treatment a couple weeks ago his lab values trickled in per usual and I was checking them prior to being seen by the doctor before treatment.  The two labs that are considered the tumor markers usually do not come back until late afternoon or evening when we are no longer at the cancer center.  That evening, his CA-19.9 came back while i was making dinner at home.  It had shown a slight increase the time before but this time it read >34,000.  I assumed that was a typo since it had been around 2,800 the treatment prior.  It is supposed to be <35 for a normal value and the highest CUrt's has been ever is 10,000.  I messaged the office the next morning to see if it was indeed a typo.  When they checked with the lab it was confirmed that it was above 34,000, which is as high as they count so we don't know the exact value.  That prompted them to move his CT scan up by about 5 weeks to see what was going on.  He had that done at KU on Wednesday and we followed up on Thursday (of this week) with Dr. Kasi, to be followed by his routine treatment.  It was not the news we wanted to get yesterday, but we are still not out of options yet.  The scan confirmed what we suspected; the cancer in the liver and the peritoneum has grown, almost doubling in size, while the primary tumor in the pancreas has slightly decreased.  The doctor explained that the Folfirinox treatments were not working anymore and it did not make sense to put Curt through those since it is such a rough combination of chemo.  They also informed us that because it was not considered stable anymore he was no longer a candidate for the trial he has been on since the beginning of September.  There is also a "very small nodule" that grew by a couple cm in the lung, but they cannot tell whether it is cancerous or just scar tissue.  It is definitely not the PE that was there while we were at Mayo later in 2023.  They are not concerned about the lung spot at this time due to its size and the fact that the liver lesions are their bigger focus right now.  So....his choices are a different trial drug, which is called the "EPIC" trial or another lesser effective and lesser aggressive chemo that is considered standard of care, but not nearly as aggressive as the current Folfirinox he has been on.  Curt chose to go with the trial drug.  It is currently approved for use in bladder cancer and a couple others I cannot remember, but it will make his treatments once weekly for three weeks and then one week off.   The treatments will take less time and be less harsh than he is used to now.  The main side effects they see is increased neuropathy in the hands and feet and skin rash that can be just minor itching to actual blisters.  We will have to wait and see how he responds to it, but so far he has tolerated the worst they could throw at this disease with a grace that no one can seem to believe.  Let's hope that continues!  The Dr. is in agreement that the trial drug is best done now and then if the cancer still doesn't respond they can do the other chemo drugs.  He will have no treatments for about two to three weeks while they get insurance approval for the new trial, get another biopsy of the liver, etc.  Hopefully, they can get the biopsy scheduled quickly so the cancer doesn't have free reign of his body for very long.  Right now, he is not feeling bad.  Fatigue and a little bit of stiffness in his hip, which is probably more age related than cancer related, is the bulk of it.  He may even feel better on this lesser aggressive treatment, who knows?!  Again, not at all what we wanted to hear, but at least we are not hearing that they have tried everything and have no new tricks up their sleeves.  Cancer has a way of making you feel very small, definitely not the one in control.  I guess that is more of a reminder than a revelation.  Often we forget it is not we who are in charge.  

A couple that we met through KU Med and an online support group that I belong to were already weighing so heavy on our hearts this past week.  They are a super sweet, newly empty nester couple who found out in October that Brad, Tessa's husband, had pancreatic cancer that had metastasized as well.  This was in October, about a month and a half after Curt's diagnosis.  Our stories parallelled each other quite a bit and we are praying so hard for them as they are for us.  They are from a small town in Western Kansas.  Brad passed away on Sunday, the 21st.  He was just fighting the fight but things seemed to take a turn Thursday or Friday of that week and he passed Sunday late afternoon.  Our hearts are shattered for Brad, Tessa, and their family.  He was only 45 years old.  I cannot begin to express just how much I despise and hate this ugly cancer....all cancer.  It just takes SO MUCH from the patient and from their loved ones.  Tessa, if you are reading this please know that we are lifting you and the boys up in prayer.  <3

Tomorrow Curt, myself, our kids and their husband/partners and kids are walking in the Purple Stride PanCan Walk in Grandview, MO to raise awareness and funds for pancreatic cancer.  We are being joined by SO MANY family members and friends!!  Curt is so humbled by all the support and love!  He is so not an emotional person but I know that it is going to be a teary day for me to see all of our supporters taking time out of a weekend and getting up early to drive an hour to be there with us! There are even a couple of Curt's favorite KU Med staff (PA and clinical trial coordinator) that signed up under "Team Curt" to walk!  Wow!  What an honor.  I am sure they love his many jokes and amazingly positive attitude, despite all the bad news he faces on a regular basis.  An example that will likely give you at least a smile today...At his appointments they ask a whole list of questions about have you fallen, are you in pain, lack of appetite, etc.  I am sure you all know the drill.  Whenever they ask "Do you feel safe at home," he usually responds with a crappy grin....."Oh, yeahhhh i suppose...most of the time anyway!"  He then points a finger at me and laughs!  They seemed taken aback at first but now expect his humor, usually with a sarcastic comment and a comment with some degree of untruth involved!  lol   We will be walking Saturday for Curt AND in memory of Brad, who SO should have had the chance to enjoy his empty nest and all the blessings of getting your family raised, marriages to come, grandchildren to come, etc.  We are with you in your sorrow as well as the fight, Tessa.  Big hugs.

That's all I have right now...I am trying my best to stay positive and happy.  I have no words of wisdom or anything poignant or fancy.  Just the facts.  We will be heading to Florida soon and are both so ready to just get away from the calendar, from KU mychart, from appointments, and from reality for a short time.  I will update once we get all the details worked out and see how he does with this new treatment.  As always, hug your people big and tell them you love them!  Time is a thief and tomorrow is not promised.  Love and peace to you all!  (Please talk to Mother Nature and tell her to chill her jets until at least Saturday night so we can enjoy the walk)!!

xoxo
Cheryl