It has been an insane 4 months and I have a ton to share...
First I am going to say, I am not a huge fan of Drs in general and most of this journey has validated my feelings. Now I will say our medical system is VERY broken and I do feel that has affected how many practice.
So as you know from my previous posts as of 12/30/24 I was in remission from my stage 4 pancreatic cancer. I have had blood tests and CT's verifying that as recently as 5/2/25 my scan showed stable and remaining dead tissue shrinking.
Then on 6/6/25 we had just picked up our Granddaughter for the weekend and were on our way home when I looked at Kevin and he said your eyes are yellow. I knew immediately what this meant. This was a Friday night about 5:30. I knew I needed to call my oncologist and thankfully have her personal cell phone number. I called her as soon as we got home and got voicemail, so I left a message and she called me back immediately. When I told her what was going on she said I needed to get to the local large hospital within 24 hours. Now she recommended this hospital thinking that being a major hospital they would have someone on staff to deal with this over the weekend (they didn't). So the next morning, we take our grandbaby back home and head to the hospital.
When I arrive at the ER they get me back and start running tests, blood test, CT, etc. My bilirubin comes back at 7.7, the normal range is .5-1.5 depending on the lab. On their scan they see a very tiny growth of the liver mass and instantly go into "you are no longer in remission" So they admit me to the hospital. This is where it gets insane. They have decided I am a cancer patient, admit me to the cancer ward (where they also have a bunch of non cancer patients) where ALL the rooms are shared rooms. In my 11 day stay I had 3 different roommates which was an adventure.
They are doing daily labs, decide I need a stent in my 2 bile ducts, so this is happening Monday when the GI specialists are back BUT hospital inpatients do not take priority over out patient appointments so I sit all day, no food or fluids and not knowing when I will go for this procedure. I had to literally beg them to get my IV fluids because I was so dehydrated (I drink a gallon of water a day to nothing being allowed). So Monday they take me in to place the 2 stents. What should have been about a 45 minute procedure turned into 2 hours and they were only able to place 1 stent as the second duct is so blocked they can't even get a wire to pass through. Their next step is to do a bypass from my liver directly into my stomach, so on Thursday they take me in for that procedure. Again no foods or liquids from midnight Wednesday night. Only this time the overnight on call dr decides I need to be NPO (nothing by mouth) from TUESDAY night "just in case they take me in on Wednesday" which was NEVER discussed or part of the plan. The next morning the GI PA comes in and asks how I am doing "I am starving" she asks why so I explain and she flips... immediately pulls that order to allow me to eat on Wednesday. So they go in Thursday afternoon for the second procedure and discover after 22 hours without food, my stomach was still full of food. This was never talked about with me, I read the report after the fact. So I ask the PA and she says "it could be malignant gastroparesis" NEVER has any kind of malignancy been found in or near my stomach and NONE of the symptoms fit. So again, no one seems concerned that I am not digesting foods and there is no room for the bilirubin/bile to leave my liver and go to my stomach. Long story short, I spent 11 days here with only these 2 procedures and then they discharge me when my bilirubin in at 18, bouncing up and down a few tenths of a point and call me stable.
So I am discharged on Wednesday 6/18 on Friday I see my oncologist and my bilirubin has jumped back over 20 to 21.6 and 3 days later is up to 27.7. Anything over 20 and your organs will start shutting down. I spent 2 weeks over 20 trying to convince a Dr I needed to get daily fluids to keep it coming down. Sunday 6/22 I went to our small-town hospital to get fluids and labs. The Dr decided he didn't like the plan from my oncologist to show up the next morning at our local hospital for the external drain procedure and decided to call the previous hospital to see what they could do. I got an email message back saying "there is nothing more we can do for you" which besides being incredibly unprofessional flabbergasted me as they had also talked about doing this external drain and now have washed their hands of me.
On Monday 6/23 on the plan from my oncologist, I headed to another local hospital to have an external drain placed. I get the drain placed that afternoon and spend 2 days there, being discharged on 6/25 even though I knew I wasn't ready. Less than 24 hours later I was back in the hospital spending 5 days there. During this time, on 6/27, they placed a second drain, this time and internal/external drain - so I now have 2 external bags collecting bile. I am then discharged on 6/30. Now knowing a pattern and NOT doing well (I could barely walk, hadn't eaten more than jello in days) was still above 20 for my bilirubin, we stayed near the hospital in a hotel that night. I had an oncology appointment the next day (7/1). I get fluids and as I am being taken back to a patient room from the infusion room, I start shivering. Figuring I was cold from the cold office and cold fluids and being generally cold, we didn't think anything of it. Only the shivering turned into violent shaking. The oncologist said "you are having rigors and are in septic shock, you only have days to live". She went on to say we needed to "get to the hospital right away" and called me an ambulance (again just discharged the day before). I get to the hospital the draw blood from 2 places to start culturing to check for infection but start me on antibiotics right away and get me admitted again. Turns out I did have a bacterial infection, but the crazy part was I had no symptoms of an infection. At this point my family is being called in to say goodbye. On 7/2 they took me back to IR (interventional radiology) to adjust both drains they hadn't gotten seated where they wanted. This time they keep me for 11 days, until the 7/12. I head home and overall do ok.
One day the week of 7/20, coming home from my daily fluids appointment, my external biliary bags slip off my dress, pulling on the tubing. I felt and immediate, sharp pain, but then it was just there. I started getting a lot of seepage into the bandaging around those sites. The morning of 7/24 it was a lot of drainage, so we called into IR they said, come in let us take a look at it. They take me up, see that it is pulled almost all the way out, so with a small tug, removed the external drain.
Throughout these visits I have had a lot of lymphedema, even on a couple doses of water "pills" to release some. On 8/5 we headed back into KMC because I was getting some red spots along with the swelling and had seen where they can indicate a bacterial infection. They get me into the ER, and get one sample of blood from my port, but have to take a second sample from somewhere else. They stick me 6 times and only get enough blood from one spot (couldn't even get a vein anywhere else) to do a pediatric test. Get me started on Antibiotics and get me upstairs. I already had an IR appointment to replace the internal/external drain on 8/6. They went in and did the replacement with no issues and kept me for 2 more days, releasing me 8/8. The hospitalist I had this time was probably worse that all the rest put together. When asked why I wasn't on fluids, explaining why it was necessary, she says well your numbers haven't changed. I said they most certainly have, 5 points! She then only gives me 18 tablets of my pain meds (which I was taking 2 every 4 hours the whole time since the procedure) AND then calls in a script for Narcan. I have been using this pain med since my diagnosis in September off and on, I am certainly NOT going to start abusing it now (when I am trying hard to get back off of it).
on 8/12 I had my next oncology appointment, I hadn't slept well the night before, slept all morning and all the way to the Dr. Even though my labs looked like I could do chemo, after a long conversation with my NP, we decided to push chemo out until next week so my body will have the strength/energy to tolerate it. She reinforced that I am ultimately in control of this journey and how much (or how little) I choose to do. She did comment how strong I am and how a few weeks ago she didn't think we would be here today. I just looked at her and said "God is not done with me"! We also did discuss backing the fluids to every other day to try to manage the lymphedema issues, we just started that (today is my 2nd visit) so we will see what it does to my bilirubin numbers and if it helps the lymphedema.
On 8/14 my wound from the external drain has started leaking bilirubin again. On 8/21 we went in for another replacement of the internal/external drain as it appeared it was blocked again.
The evening of 8/26 I started passing large amounts of blood, so off we headed to the ER again. They got me right back, gave me platelets and plasma and finally after several hours got me admitted. More platelets and plasma the next day. On 9/4 another drain replacement. On 9/7 I woke up not feeling quite right, fell back asleep, into what ultimately could be called a coma due to high ammonia levels. There were times I would come around briefly, but was very belligerent and argumentative. Late that afternoon after some meds, I came around and was totally normal. They took me late that evening for and MRCP (essentially and MRI). During which they found some abscesses on my liver. The hospitalist decided to consult with the infectious disease team. They come in that day and say "we want to biopsy your liver" I said no (biopsies often spread cancer). They didn't know if these were infection or cancer or something else. When we talked with the team that would have done the biopsy, the dr said 1 because I have been on antibiotics for several days at this point, if it is infection it wouldn't give accurate results and because there are several spots one could be infection, one could be cancer, one could be dead cells, etc... So we opted to go with a strong course of antibiotics and will be following up with infectious disease for more imaging to check things out. On 9/10 my drain was checked again because it was not draining into the bag, but it is working properly internally. On 9/9 my oncologist came in and told me because my labs are so unstable they cannot do any more treatment as it will create a vicious cycle of treatment into the hospital for days/weeks, over and over. I was released on 9/12 when labs were looking pretty good but have to get labs every few days to monitor.
I was pretty weak overall after 17 days in a hospital bed, too much sitting around, not enough food/protein (which I have been working on increasing as my stomach/body allows) and everything is just day by day. One day is great (I have to be mindful of not doing too much on these days) and the next could be bad. So all a big learning game, lots of prayer and trust as I walk through all of this.
We are now near the end of October ~ I have been doing labs twice a week monitoring things. I had a CT scan on 10/17 to check progress on the liver abscesses and if the anti-biotics worked to shrink it. They did! 10/20 I had the biliary drain replaced again after battling some issues including lots of upset tummy and vomiting and it is night and day difference with it actually draining into the bag and not backing up into my stomach causing issues. 10/22 I met with the oncologist. My bilirubin has been climbing, so no treatment, but because we know the abscesses are infection and not cancerous she is ok waiting a bit. We reran the ctDNA testing to see what that shows about active cancer, still waiting on those results (should be near the end of the month or so). Tomorrow I have a telehealth visit with the infectious disease Dr to go over CT results and decide if we do further anti-biotics to continue shrinking the abscesses. This is the longest I have been out of the hospital since June so counting that as a win!
We are so appreciative of all the prayers and financial help we have received so far. It means so very much to us







.jpg)













