12 blankets and 4 pillows

For this post I have to start back on Thursday 10/24.  That day everything was fine and normal as far as I knew until bed time happened.  It was during the night I develeoped a fever with chills and felt fine after getting up and getting through a shower and my typical morning routine.  The plan for Friday included me working in the morning and then Leah and I heading to Holland for our typical fall weekend away at the cottage.  Friday was her Birthday so we frist had lunch with Lydia and Leah's Mom and then walked around downtown.  After we were finished downtown we headed to Salt & Pepper for her "birthday dinner".  

The rest of the weekend included plans from Hope College's "One Big Weekend" as in the football game and the Nykerk performance.  And then we all planned to relax and enjoy the rest of the weekend. We got back to the cottage and watched a little tv and then headed to bed.  Again Friday night my fever showed up yet again and the only consistent thing besides the fever was darker color urine.  Friday I just coulodn't sleep very well so much of Saturday's plans were scrapped and I napped several hours during the day Saturday.  I woke up in enough time to watch the rival Michigan College football game.  Late into the game we headed up to bed and only minutes befroe I started having chills and shaking which continued for the next several hours and kept both Leah and I awake for different reasons.

I survived Saturday with slightly more sleep Saturday but not much and so now we got to Sunday.  We had originally planned on leaving for home after church and lunch and packing up.  Since the previous 3 night had gotten worse a little every night,  we planned to watch church online and then head home shortly after having food.  So we got through church online and since my appetite had tanked during the weekend, we headed home right after packing up after church.  On the way home (me driving of course) my chills and Shaking came back.  I made it home but I'm sure not without making Leah very nervous I'm sure.  After arriving home I turned on the heat in the house since the heat and air had been off for weeks and it was only 62 in the house.  I crawled under a blanket on the couch and tried warming up.  Leah called my Oncologist's On call service and explained what was happening and the doctor on call urged Leah to get me to the hospital.  So by 12 p.m. Sunday my mom arrived and we were all on our way to what became a really long week.

Around 12:30pm on Sunday we arrrived at what some might call hotel Zeeland.  I'm not sure I can call it a hotel but it seemed through the process it really became one although not intended.  We checked into the ER and were told to take a seat and wait.  We were deciding where to sit and the triage nurse called my name.  We quickly explained the problem that brought us and and were brought back to a room.  Inside that room I was given the gown and things moved along relatively quickly for a short time.  I first had my port accessed and blood drawn from there.  Then they wanted blood cultures so they got 2 vials from my left arm and spent way to long trying in the right.  By then I was called back for a CT scan immediately followed by a chest X-ray.  When I got back to the room my nurse tried getting the second set of cultures through the left arm which involved the needle some fishing and then an ultrasound machine got added.  At last it was decided she needed to place an IV in my arm.  After the battery of test were complete 2 things were found.  1. An infectoin was discovered in the blood taken from my port and 2. It was discovered that something was blocking the bile duct. By the time we heard this it was from the second doctor we met in the ER.  Part of the news he delivered was that I needed an ERCP procedure which they cannot do in Zeeland .  We were told that we were headed to Blodgett Hospital but we were still waiting for a room before we could go there.  After many times talking with a nurse or doctor we discovered we were staying the night in the ER and I would be getting a room on Monday.  During one of our exchanges we asked for a hospital bed for the night.  Leah and my Mom went home to get my C-pap and then back home for rest.

I got my cpap at 9 p.m. and it was 12:30am when staff showed up with the hopsital bed.  Prior to the hospital bed I had 1 blanket and 1 measly pillow.  I was also sleeping so I woke up stood up and moved my belongings to a chair and held on the the 2 IV fluids while they moved my ER bed out and my new hospital bed in the small room.  During the exchange it seemed like the pillows and blankets multiplied.  It seemed as though I had about 12 blankets and 4 pillows.  Through my faith I believe that Jesus was in that room with me but I'm confident he wasn't there to multiply blankets and pillows.  He was there to meet my needs and that was getting rest, getting calm and getting to a place whe I could effectivly heal me from the things gone awry.  In all actuality I had 2 pillows and 3 blankets along with a fever.  I belive the rest of the night went relatively well.  By the morning I was ready for the transfer to Blodgett.  It was much later in the morning before we found out we were close on the list and then assigned a room.  4 p.m. on Monday I was given an ambulance ride from Zeeland to a room in Blodgett Hospital on the 4th floor overlooking Fisk Lake in Grand Rapids.  Monday at blodgett consisted of resuming antibiotics that were started in Zeeland and working at getting the ERCP scheduled. 

It was Tuesday Doctor rounds (which happen between 10 and 12 ) with GI in order to find out the ERCP was scheduled at 4:00 P.M.  I braced for a day without food and then at 1 p.m. someone was at my room to take me to the ERCP.  We had only a few minutes warning in order to get ready in the appropriate clothing.  Then we all walked down to a different floor with my family stopping at the surgical waiting area.  From there I went down the hallway to the endoscopy area.  I got in there met the doctor and anesthesiaologist and then signed the paperwork and got wheeled into the room.  I was given an oxygen mask then they pushed the sleeepy meds through my port and I quickly remember the room fade.  The next thing I rememebr is waking up in recovery and then back to my room where I met my family again.  I knew what I was told by the Doc before and it was only a matter of time before he stopped into my hospital room.  He claimed he place a temporary Stent inside my permanent one and inspected and biopsied a tumor by the bile duct.  He then asked for my medical history.  I explained how in May of 2023 I had the same symptoms due to a tumor pressing on the bile duct.  I then told him what happened to all parts of the tumor and he said where he had taken the biopsy was likely what already existed and treated.  We would need to do a few things in regards to this ERCP  1. I would need to schedule this outpatient again in 8 weeks in ordrer remove the temporary stent and 2 there was some growth inside the bile duct the Doctor will want to cauterize at that next visit.

During the remainder of Tuesday and the First time today (Wednesday) I got to try catch up on meals, continue antibiotics, and carefully watch my high Liver number begin to drop. (5.7 to 2.1 leaving hospital)  (Normal number is .2 to 1.2) This morning at rounds I heard from both doctors they were willing to discharge me today.  It was about 1:30pm when we finally left the hospital for my first trip home since Sunday Morning.

When getting home I attended to items needing to happen for me to continue work tomorrow. And then of coure tried resting and watching tv.

I'm still on the improvement trend and will have another appointment with my primary doctor to complete anothe blood test to check those liver levels again and then talk my him about resuming my blood pressure meds.  We'll also need to follow up with my oncologist in order to see what she wants to do with the pet scan (if she wants to bump it up or leave it scheduled as is).

This was a few days with a bit of anxiety for me and for those of you who already knew we felt those prayers.  And will continue to appreciate those as this continues to be something we need to talk about for at least a couple months.

So until the next moment.  We apprciate your prayers for this medical bump.

~Kent

3 more months

Friday we saw the Radiation doctor.  She has always seemed like she would give you an honest yet caring answer to your questions.  We discussed the results of the CT, MRI, and even looked at one of my previous PET scans.  Her view is that the tumor is "dead" although we won't exactly know that until we have a PET scan.  However if you do a PET scan to early all the inflimation caused by radiation can show up as active cancer even though it is not.  In her mind having one around Thankgiving would be an appropriate time to let any inflamation calm down.  

When asked if waiting until November was to long she also stated that I have "A very slow growing kind of cancer" so she's pleased to see there is nothing new in the time period since surgery and radiation.  I also asked "If there is no active cancer, where does the Radioactive sugars go?"  That's when she pulled up the PET scan and showed us the image of what lights up.  Your brain, heart among other things light up.  You could see my tumor before as a red spot in the middle of greeen. 

Per the tumor, She stated the body may absorb it or it may not in which case it stays where it is as dead tissue.  That didn't concern her.  I will be o.k. with it being there as long as I can be convinced there are no living cells.

So as I stated on the last post we are praying for a scan where it shows "No active cancer".  Until then I get 3 months of normal living.

Results Day!

Results day!  That's what I'll call today at least if I hadn't read the reports the day they came out.  Today I had a doctor's appointment with my oncologist.  The point of today's meeting was to talk about 2 things.  First Tumor board met on Aug 22nd and my case was presented there by my oncologist there.  Second I was there to discuss the results of my MRI which I had Saturday August 24.  

When my oncologist walked into the room we quickly got to what was happening.  She said that the Doctors in tumor board (including a colleague to my radiation doc) agreed the spot on the CT was a result of the Radiation treatments I had.  The MRI report also mentioned the spot in question and said "No abnormality".  So all that to say my oncologist agreed that things were stable which is the best we can ask for with the tests I've had following treatment.

The other notable thing that was discussed with her is the pain or irritation in my skin from my belt line to the bottom of my shorts.  She didn't seem to know the cause but threw out several things to try to relieve the pain including stretches and excercise.  We have another appointment tomorrow to discuss the MRI/CT with the radiation doctor.   Well bring up my skin irritation with her and see if she might know what might have caused this pain.

What's next you ask,  Sometime in the next 3 months (closer to Thanksgiving) I will have a PetCT and then another meeting with my oncologist.  This scan will show any cancer activity so what we are hoping and praying for is that this scan shows nothing.

~Kent

A clearer picture

I might as well apologize before I get started.  This post will be information packed and I'll do my best to explain everything but its still all swirling around in my brain freshly as I haven't had the appropriate amount of time to fully absorb this all. 

Last week Monday (8/12)  I had a CT scan. This is the standard way they check progress at least for my case.  So all week it has been wait and watch.  Today was my Doctor's appointment to go over the scan results but in my case I read it when I have access to it since we all want to know what it says and several of us are nervous until we get the information.  It was Friday afternoon when we got the results of the scan.  Leah came into my office exclaiming that I got a test result.  Sure enough I checked my phone and once logging into the app I had full access to the Report that the Radiologist writes based on the imaging.

Most of this report was good from the standpoint things were stable.  There were two things to note.  First the size of the tumor, and second there was a new location something was spotted.

The size of the tumor was compared to a scan I had in November (post chemo and Pre Surgery)  The report said the tumor compared to the November scan and was stable.  If you read the blog regularly in November the Size of the Tumor decresed and then after a break I had surgery to remove "Half" the tumor.  Yet the report read as if it was similar to the size of the tumor on Nov 30.  When we asked Doc about this she is willing to talk with the Radiology Doc about what he meant, however there is a tiny little phrase in the line stating "PostSurgical changes....."  meaning this isn't the same as November since it was operated on.  I have more to mention about the tumor which will come later.  Hang with me please.

A new location was spotted. This is along the liver capsule which I learned today is the rim around the outside of the liver  There is a ligament that ties your liver to the abdominal wall which is normally located between left and right lobe.  Since I really only have a left lobe it's really difficult to tell where that ligament lies that is the location where this new thing was found.  What is it you ask?  Well according to the report it is "Possibly subcapsular fluid indeterminate in etiology, probably less likely the tumor spreading along the capsule"  Which really says this is either fluid or tumor spreading.

Today my Oncology Doctor wanted to schedule a PET scan for 12 weeks from now.  Leah and I both asked for something sooner.  They walk a tight rope of what scans they can throw at you without giving you more radiation.  What everyone in the exam room agreed to is what follows.  Doc will present my case at Tumor Board on Thursday morning.  During the next week or so I will be having an MRI.  Then in roughly 2 weeks I will meet with my Oncologist again to talk over what Tumor Board had to say and go over the results of the MRI.  The MRI will give a clearer picture of what we are all looking at.  The MRI has more detail.  Likely in 2 weeks my Oncologist will order a PET CT to be taken in 8 weeks.  This test will tell where there is activity.  Between these tests we should get a good Idea of what is where and what it is doing.

At the end of the appointment we walked out and down to the ground floor and waited outside for them to bring around our vehicle.  While waiting Leah talked with her Mom and then hand the phone to me to give detailed information.  Walking across the street was my Radiation Oncology doctor.  We had a good chat with her outside the building about the details we learned and she said she was going to start looking at the report and wait for the MRI.  She will then want to meet to discuss what radiation did indeed accomplish. 

So again we are in a wait and watch kind of time until the tests come back and clear up the remining questions.  We'll post again after the next Doctor's meeting.

The Waiting begins.

Today is 1 Month from the day I graduated from radiation and chemo.  I'll be honest it has been a long and good month.  I feel like I'm finally getting back to my normal diet, as it changed while in treatment. I wish the acid reflux late in my treatment didn't knock out a lot of fruit.  Iam eating watermelon on a fairly regular basis as it is one fruit that is ok with acid reflux.  One thing that changed is my liquid diet.  I previously could not stand the taste of water and had to have crystal light in my water.  Lately I've been drinking water bottles and can handle that, and water when we go out to eat.  I had Mexican a few time recently and did just have Pizza 1 time this past weekend and that went well.

Since today was 1 month,  it was the day my CT scan was scheduled for.  Previously you would pick up contrast (barium) at your provider and drink that the night before and the morning of yout CT scan.  Today I was told to arrive at Lemmen Holton 90 minutes prior to my 9:30 scan.  I arrived a few minutes after 8 and checked in.  We sat down in the lobby and a few minutes later my tech came out to deliver my contrast.  What he had in his hand were 2 normal bottles of water.  This supposedly had my contrast in each bottle.  I personally was hoping for the best but expecting the worst.   I took the first swig of the bottle and couldn't taste or smell anything than water.  I got 90 minutes to down those 2 bottles which took me about 40 minutes.

Shortly before 9:30 am my tech came out and called me back. I got settled into the CT table as they took 2 images prior to port access.  I then had nice long conversation with the tech while I waited for the nurse.  The nurse is the person that has to do the port access.  I mentioned I didn't want him to miss and explained I had someone miss recently.  He said he only missed about 1 in 1000.  I know he's been doing port access there for at least 10 years.  He  told me everyone with a port wanted their CT scan done today.  Which really meant he was busy and that's why I ended up waiting.  Once port access was complete I got another image with the IV contrast and then got the port access removed.

And now.... The waiting begins.  I think I'm o.k. with this particular scan but based on conversations i've had, it seems like I might be the only one who feels that way.  I meet with  my Oncologist next Monday the 19th during which we will discuss the results of this scan if we have those results.  She will be looking at the place of radaition but more importantly she will be looking elsewhere throught the scan for new growth.  I am personally hoping they find absolutely nothing.

So until next week we'd like prayers for clear results and calm minds.

~Kent

The Monkey "Fell" out of the tree

For 28 days I walked into the radiation building with a bit of hesitation.  Not much hesitation at first but definitely more as those days got closer to today.  Today is what we have been calling graduation day.  From the early moment in those 28 I saw someone walk out with a certificate in hand and stated they were done.  Today was my day to get that certificate.  It was well deserved, at the beginning of the treatments I thought 28 treatments would be no big deal but it was a very difficult journey for many reasons.  For weeks I have been looking forward to the end.

One of the things in the radiation room were about 6 panes on the ceiling with a picture of a tree backlit.  For most of the summer there was also a photo of a squirrel.  Shortly after I started treatment a monkey showed up on the ceiling.  Someone thought a monkey should be in the tree.  About a week ago the monkey "fell" out of the tree and went missing.  I wasn't crying but I told the techs 2 days ago they needed a Blue Jay in the tree.  I wondered if it would show up before I graduated.  Today when I walked back, there it was,  a Blue Jay in the tree with a Squirrel.  I had a good 5 minute conversation with the tech about birds, bird feeders, Blue Jays, other things birds eat (that they shouldn't in some circumstances) all while they were prepping me for the radiation treatment today.

This treatment was very difficult for what reasons you might be asking?  This treatment set consisted of oral chemo and radiation.  What that really looked like is as follows.

8:00 AM regular meds (including the one that allows me to retain food for more than an hour)
9:15 AM Zofran (anti Nausea)
9:30 AM food of some sort so as to not have chemo on an empty stomach
10:00 AM Oral Chemo
12:00 PM - 2:00 PM  Lunch in between this time.
2:00 PM  I NEEDED to stop eating and drinking 2 hours before treatment.  They didn't want my stomach expanded
4:15 PM treatment
Immediately following treatment (Get food)
5:00 - 7:00 PM Dinner earlier than Later
9:15 PM Zofran (anti Nausea)
9:30 PM food of some sort so as tonot have chemo on an empty stomach
10:00 PM Oral Chemo

This happened every weekday so literally I was tied to the calendar and the clock.  1 by product of Chemo was an (often) upset stomach.  What really helped was more often than not was food.  You would find me eating a meal and then turn around 30 minutes or so later be snacking on a muffin or bread or cookies or something calming to my stomach.  What most people don't know is immediatly after PM Chemo dose I was going to bed.  My guess if you would ask Leah she might say I was running off to bed.  Sleeping allowed me to turn my mind off and all the associations it would bring to the front of mind.  

To say I get a break is putting it lightly.  The only thing I will have for a short time is needing food to calm my stomach.  I no longer have the time or daily schedule I had for the last 28 treatment days.  

What's Next you might be asking.  I recently met with my  Medical Oncologist and she wanted a post treatment CT.  She was willing to put it 3 weeks out but I had heard from my Radiation Doc that a good month was best for looking at the tumor.  So 8/12 is the date for that scan and my Oncologist is interest in looking around to see what else she can find lurking around.  I am hopeful what they find in the line of cancer is already treated cancer and that they do not find anything new.  I am ready to put time between the past year and any future medical treatments.  8/19 is my follow up appointment to discuss the CT results with my Oncologist.   My Radiation doc will also want to have a follow up but will call and schedule something after the CT results come back.  

So until 8/12 I get to try live life as "Normal" as possible.

Photos of the shakes are Day 2 and Day 28 post treratment treats.

~Kent

"I'm Done!, but I still have 8 to go!"

 20 down, 8 to go! The first apointment Kent and I went to of Radiation we were were told you will have 28 to 30 treatments of Radiation.  Both of us looked at each other and said, "Ok, One month it's doable."  No one except for those who are going through this know what it
is exactly that it takes to go into this regimen.  Timing is everything, sleep is precious and every bit of energy you have is spent being around those you care about, but colapse once you get home where you can rest.  Kent is at the point of everyday is exhausting and long and bed is never to soon. 

This weekend we spent one night away at the cottage. it's enough removed from home but a place he can relax , yet escape inside to sleep or rest if he's had enough. Home, where Kent spends all his time still working his job daily though chemo and radiation and then spending his evening quietly sitting in his chair just mustering all the little energy he has left, becomes hard to be at now that he has to have all his meds at home. Chemo becomes a very hard association when you are constantly at that same place. 

Proud would be an understament of all of who watch him fight every day! He carries on with daily tasks like going to a Restraunt in the middle of the day with his daughter just because time with her is so important and she has a very busy weekend including a wedding and she spends her Summer at Camp Geneva., He spends his extra time making sure all the T's are crossed and i's dotted when forms need to be in for Lydia, or if and when anyone else needs help too!

Tommorow Kent will start one of eight treatments left.   2, four day weeks with a 4 day much needed break over the 4th of July Holiday. I ask to please pray he makes it these next 2 four day weeks!  He's a bit uneasy about having a break and not wanting to go back into it after that.  I know he can finish strong, but he needs you his biggest cheerleaders encouraging him. 

July 11 is the day! Graduation day from Radiation! He will get a certificate of completion. Well deserved!  I told him and will hold on to my word we will go to a restraunt of his choice to celebrate! I will not share the restraunt at this time but I without a doubt know what he will pick and we may have to wait for Lydia because its that good and we all want to share in his accomplishment! We'll share for sure when it becomes a reality.

Matthew 11:28 through 30 

"Come to me all you who are weary and burdened and I will give you rest. Take my Yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light! 

Thank you for all being Kent's prayer warriors and biggest Cheerleaders to keep on and not being Done! 

Leah