Paging all nurses!!!

 Paging all nurses....... 

Let me start at the very begining a very good place to start.   Last week Thursday December 19th, Kent had an ERCP.  The procedure that placed a stent in his bile duct.  He did well in his recovery, at the hospital. He walked laps and impressed staff with his gained improvements. He regained strength and found himself coming home on Saturday the 21st of December! 

Sunday the 22nd of December we started of our day watching online church and Kent said, he was hungry.  I quickly tended to what he needed and a bit later found it just didn't agree.  After a few trials we quickly evaluated his health, he still wasn't improving. After consulting with his Chemo nurse, who has quickly become more than just a nurse (a now life long dear friend), she advised us that we should come into the Chemo Clinic to be evaluated, get hydration while that was happening and wait to be tended to by a same day PA. We would consult via PA to hear from his oncoligist. This all resulted in yet another direct admission, and a wheelchair ride in the tunnels from the Chemo Clinic building to a room at our Hospital Hotel.

After entering the hospital...... another nurse quickly came into our room. We were not even there 5 minutes.  She  entered  all the important information needed as a direct admission and we settled in.  We were not there long before we were visted by Doctors , PAs, Nurses, Techs, and family! The consensus was made quickly...Kent was in need of yet another stent in his Duodenum. We soon figured out the Duodenum is important part of the digestive system. Kent had a narrowing of his Duodendum and neeeded help opening it up so food could pass through.

  We entered into the Hospital slightly before Christmas, a time where Nurses who do these procedures like taking off.  A bit later we were visited by someone in GI that told us there was a slim possibilty that we could have the procedure on the 24th. Our hopes were dashed a bit later as we had a Doctor but NO Nurses to assist in the procedure. Paging all nurses...We need you! Please help Kent! We were told they called in sick! Convienant...NOT!!Probably not reality either! Being Christmas eve.

  Dec 26 th..... We were eagerly waiting a same day procedure time, Kent informed me by Phone call that we were on the schedule for 11:30 am. Yay! A Doctor, and a NURSE! 11:30 am came and went, 12 pm came and went, 12:30 pm our floor nurse came to our room  and said, let me check what is going on. While we waited... she checked on the computer in our room and she was shocked to see Kent was bumped OFF the schedule. She consulted the provider and somehow miraculously a while later he was back on the schedule for 3:15 pm. Lydia and I had not eaten yet, so we told nurses we were going to  grab a quick bite near the food court in a part of the hospital that was a bit further than the cafeteria.  We were just going to order as I recieved a call from the nurse saying they are here to get him for procedure and we needed to get back ASAP! 

Kent was quickly transfered down to the procedure intake area, prepped and taken back within 30 minutes. We were all relieved that he was going to be rid of  his intense pain that made him emotionally and physically weak.  As Kent was in procedure we again went back to get lunch and then made our way back to the waiting area were they would call us back. This is where we would consult with doctor to hear how the procedure went.  Kent overall did well!  The procedure went as planned. We saw him aproximately 2 hours after. He was alert momentarly. Kent rested almost 3 hours after and then woke up. When he woke up we had found that his body had somehow reacted by sweating.  He was uncomfortable. We attended to that, helped him get settled in for the night, and nurses again came to keep the pain at a minimum, while he would try to again get rest. We are very thankful to have this procedure behind us! 

Some things to think on, pray for Kent and his continued strength. For him as he gradually is re-introduced to food, to tolerate it and like it again, and to not be affaid of it. Pray that he is able to start Chemo on the 2nd of January and accept that he may not be strong enough to recieve it, but that he needs it. Please pray for Lydia and I as we stand by him giving him care with love but enough encourgement to try for the hard stuff! 

We can not speak enough of the many who have already and will continue to care give for Kent!  Paging all Nurses, we say a heart felt thank you to ALL of you! You have stood by him and encourged him and his family and have not only are you just nurse's but have become life long friends! 

Today, Kent and I celebrate 27 years on the 27th! It may not be the celebration we hoped for, but we are together and have Lydia by our side and that is all we need! 

- Leah

Frightened

 This post really starts a week ago today.  Last Sunday we watched church online, went out to grab a "Safe" lunch.  I wasn't home long when Lunch decided to reappear.  This happened again Monday (a different time of the day. And then again Tuesday.  It was by Tuesday, I needed answers.  Leah came home from work and Lydia met her on the driveway expressing my wishes to go somewhere and be seen.

She began calling The doctor's office of my Medical Oncologist.  Long story made shorter they wanted us to come in for Hydration.  Nobody in my family really thought I needed hydration however this appointment was necessary.  I had one of my nurses from 10 years ago and she was very helpful in thinking about questions we needed to address at the Dr appointment 2 days later.

The next 2 days seemed to go "slightly" better but only sligtly.  By Thursday Lydia drove us to the appointment with my Medical Oncologist.  It was during this appointment we were suggested to start Chemo the following Monday.  Due to Christmas and News Year's day we elected to start that on Thursday Jan 2.  During the appointment Lydia asked the time frame for chemo saying you can only run a marathon for so long.  The response is that Chemo will be indefinitely until either Toxicity or disease progression happen.

During the appointment the doctor was waiting for lab numbers to come back from the lab. Which seemed long and had not by the time we were dismissed.  We no longer made it home and I got a call back from the doctor stating my Liver number where climbing and she wanted to admit me to the hospital.  We waited several hours for the call then made our way through snowy Grand Rapids to the hospital.

Over the next couple days there I had an emergency ERCP which took a longer time than usual.  This is a procedure that uses an endoscope and x rays to diagnose and treat issues with the liver,gall bladder, bile ducts and pancreas.   Yesterday I was placeded on  advanced to soft foods and was doing well.  I declined my anti -nausea meds during the day which was likely a mistake.

Saturday afternoon I was discharged from the hospital and allowed to go home.  I ate soup for dinner and a few hours later my stomach decided to reverse course.   I took an Atvian after that was done in order to relax and sleep,  neither of which happend.  By 5 AM I had Leah get me zofran and took that since my tummy wasn't feeling well.

This morning we decided a small amount of food was what I needed.  So I had a banana and again saw that an hour or two later.

Needless to say much of this Frightens me.  Prayers would be appreciated for keeping food down and tummy feeling normal.  And also that treatment goes "SWIFTLY" and effectively.  I'm not done living yet and that's not how treatment makes me feel.

~Kent

Getting on the merry go round....

Merry go rounds are supposed to be fun.  You run in the circle pick your seat and wait for the ride to start.  About 3 minutes later you come to a slow stop, you can get off and return to your family.  My life feels like a merry go round a bit but not in the sense I described above.  I'll get to the information, please hang on with me....

This past Tuesday, November 26 I was scheduled for and had my PET scan.  Normally the radiology team is so busy it's usually takes 3 - 5 days before you even think about seeing the report.  I'm not sure I would call it luck but I got the report on Wednesday halfway through the day.  At this point I read through it and still have not had the viewpoint from an or my Oncologist.

What I read (and this is paraphrasing) is there are several spots found on the liver and also the tumor that remains next to the bile duct is also still active.  If you remember back to this past summer I had radiation and oral Chemo targeting this very tumor that is still active.  So my question is how can it still be active after 28 treatmens of radiation?  I do not have any appointment scheduled with my Radiation Oncologist and even if I did I'm not sure she can appropriately give me the answer I'm looking for.

So what's next you ask.  Well I'm not able to tell you.  You see I found this all from looking at the report and knowing enough to intelligently figure things out.  I meet with my Oncologist on December 12.  During this appointment we should be discussing the PET scan from her point of view and likey this will be the discussion of what treatment should be and when it should be.  Allow me some educated speculation.  The cancer is in more than 1 organ / location, therefore the treatment likely cannot be surgery or radiation so the only realistic option left is systemic or ( IV) Chemo.  I should know more definitely after the Dec 12 apt.

During this Holiday weekend I ended up in the hospital for a GI issue.  I came home Yesterday and today I somewhat resumed my normal life.

So here we are on another trip around this merry go round and I'll be honest I'm not sure I'm ready for another trip around.

We appreciate your prayers for strength for the journey and complete healing.

We will update the information here when we have the Oncology apt.

~ Kent