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

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 

Farewell my good friend

Thursday we had a vet appointment with our struggling fur baby.  She had been in previously with a toe on her left foot which was larger than the rest.  At the time we elected surgery to remove the toe and pathology confirmed it was indeed cancer. This Thursday's visit was for an enlarged to on the opposite back foot.  We suspected a return of the cancer on her foot was making walking difficult for her.  When visiting the vet he examined her then continued to tell us her toe was not his primary concern.  The muscles in her back hips were basically gone.  This was making it difficult for her to walk around.  The toe was just adding to the diffuculty for her.  In her current state the future looked grim for her.  We were presented with very few options with the best option being the one nobody wants for their beloved animal.

It's been quite an adjustment around home with her no longer present.  I know she was loved as she always followed Leah and she sat by me when Leah wasn't around which meant every work day in the last 4 years.  We welcomed her into our home roughly 10 years ago as a Paws with a cause Breeding dog which was when I was just coming out of my first cancer journey.  So in a very real sense up until Thursday she has been my emotional support dog.

While it's difficult, I know I have the support of a lot of people and I wouldn't give that up for anything.  Today was treatment number 16 out of 28 which means I have 12 treatments left.  My schedule going forward looks a little interesting.  This week I have today thru Friday with a couple days at an earlier time.  I will have Satruday off and then start treatments again on Sunday and continue through Wednesday.  At that point We will all with be celebrating the 4th of July and so I will have a 4 day weekend including Thrusday and Friday.  The following week I will have 4 treatments left and should Graduate on July 11th from the radiation/chemo program.

Prayers for calm mind and calm stomach would be appreciated.

~Kent

What goes down.....

I know what goes up must come down but what's the rule when something goes down?  I'm still not sure I know that rule fully.  The last several days have not gone great and I'll expalin why.  Yesterday day was fine through Chemo number 1 and lunch and treatment.  On Tuesday I see the Radiation doctor after treatment wich was the case again yesterday.  Things were fine through the Doc appointment and even to the car and part of the way down the road.  The further I drove the worse the pain got.  I got the car to Borculo and pulled over and we switched drivers.  Leah drove the rest of the way home even though she doesn't feel comfortable driving my vehicle.

It was on the way home I started putting the pieces together and figured out this was an Acid Reflux issue.  I took an antacid right away when we got home and then was careful with food last night and also slept more upright.  Suddenly the puzzle pieces aligned and looking backwards seemed much more clearly.  My acid reflux seems to be brought on with my high stress and anxiety.  Unfortunately this is not a new problem but shows up infrequently enough I can't really prepare for it but have to react to it.

Lately I have been eating fresh fruit like Peaches and Cherries and then eat things like burgers and occaisionally Pizza  or chicken with Barbecue sauce. None of those options are great options with Acid Reflux issues. Yesterday I had several of the foods mentioned and by the time I had to lay down for treatment I was evidently high on acid and then I laid flat for treatment (if you know acid reflux that's a No No).  

Today I continued my antacid and was careful in the food department.  Rule of thumb today for food is bland (and boring?)  While at treament today I was met by the dietician again.  We explained the happenings of yesterday and the antacid I was taking as a result.  The dietician noted she recalled a reaction between the antacid I was taking and the Chemo I am taking.  She mentioned some other options for antacid, so Tomorrow we'll try the new antacid and see how things go.

On another note the Radaition doctor said to continue on as normal and that somedays will be worse than others.  I am  hoping the worst days are behind me or at least that we've identifiued the problem.  Tomorrow's treatment will be number 14 which is half way through radiation treatments.

I would appreciate your prayers for calm and peace and stamina for the next 15 treatment.

~Kent

Politely say Goodbye

Today was day 8 of radiation with oral chemo.  According to what I was originally told I would be having 28 - 30 treatments.  The process has changed slightly since the beginning which I'll explain in a minute.  Since chemo education I was told I would have an appointment with my Oncologist in weeks 2 and 5.  Since this is week 2 I have had 2 doctors appointments.

Monday I met with my Medical Oncologist.  We talked with her and much of the conversation revolved around nausea and how to handle it.  You have to know on chemo my stomach is often "off".  It seems food helps much better than most anti-nausea meds.  The only by-product is the scale keeps going up.  It's not my favorite thing however I forget about the scale for the short moment the food goes in my mouth.  The Oncologists words were "choose foods with fewer calories".  To make a long story much shorter, the efforts to reduce nausea were 1. Reduce Chemo down to 1500 mg from the 1800 mg I was taking previously, 2. Start taking another anti-nausea med at bed time.  Per the chemo reduction I feel like it is making a small amount of difference so the nausea isn't as bad as what it has been. I would like to share as many of you don't know (since it didn't make the last post) is that I ended up skipping Friday's second dose of chemo due to nausea and what results from it if you don't do anything.  I would politely say goodbye to nausea at every occurence.

On Tuesday I had my treatment and then met with my Radiation doctor.  I informed her of the changes my oncologist made and we talked more about handling the nausea.  We talked a little bit that food worked better than meds.  She said that was ok and that they just didn't want me losing weight.  The other thing we asked is how many radiation treatments I was getting.  She said that during the mapping process they decided on 28 treatments for my case. 

Later that night I took my new anti-nausea med at bed.  I was extremely tired getting up this morning and continuing throughout today. later I read per symptoms on the med sheet that drowsiness was a side effect. This evening, after radiation I started becoming more alert (which should have happened this morning).  Per that med we are suspecting that the sleepiness was a result from that.  We're discontinuing that med and will talk with my Oncologists office tomorrow.  I recieved a phone call yesterday as I waited for my Radiation appointment that I was missing a scheduled weekly blood draw. They conveniently scheduled my weekly labs right during my radiation appointment so I will need to figure another place or another time to have my labs drawn.

I would appreciate your prays for the next 20 treatments.

~Kent

He made it!

He made it! One week down, several to go! Kent was nothing short of amazing in this first week.  The prayers were felt, and answered.  The first night was a little bit rough as he had a pounding headache and had the feeling his BP was high.  We pray that  these next few weeks continue as it has after the first night.  Kent feels "off" from time to time, but as of now food helps that "off" feeling.
For any of you that would be interested his days are very planned and routine.  8 am through 10 am are a set of various meds and food routine.  Eating Lunch no less than 2 hours prior to his radiation.  Food directly after to prevent the "off" feeling again.  Between 9 and 10 pm he repeats a second dose of his chemo meds.

 Radiation is scheduled for 4:15 PM, we walk into the building, he is greeted by a receptionist, and they open a door which we both enter and down a slight hallway is a small waiting room in which he and I wait for him to get called back. Kent is usually a bit quiet before going back, he spends his time looking on his phone usually.  When Kent is called out of the waiting room he enters a room with a huge machine that has a mold of his body on it which he lies on and the radiation machine moves back and forth around him.  The process takes no more than 15 to 20 min.  One thing that I have learned in this 1st week of going with Kent is that each patients that enters in this building have a genuine connection.  Women having heart to hearts and caring for each other, an employee came out into the waiting area to see a patient as it was the patients last day the next day and the employee wasn’t going to be there to say goodbye. nurses trying to help someone remedy a reaction to a radiation treatment and lastly Doctors who come in and genuinely take the time to hear how you are!   Cancer is a journey that NO one wants travel but God surely places people in role to help those travel that path! 

This week’s highlights that have helped Kent to have a normal week go as follows... we welcomed a dog that we are house sitting for 2 weeks, we made our way with my mom to the kick off donor dinner at Camp Geneva,  sat with Lydia at that dinner, and today helped her settle in to be 1 of 4 counselors who are among the very first to stay at Mission Point! A brand new cabin for high schoolers on the shores side of camp.  One last thing Kent has enjoyed... a frequent stop at Chick-fil-a for his Cookies and Cream shake. A much deserved shake for all he has gone though.  

The beginnings of next week's happenings... Sunday we will begin our week at Camp Geneva again! They will be commissioning 110 wonderful counselors to start their summer with some awesome kiddos, the most counselors Geneva has ever had.  Their theme song this year says it best, " At Geneva,  where it's nice to meet ya!"  "God's Heart is really cool."  A few awsome lines to help learn the theme HEART! We can't wait to hear the stories of Lydia and her journey this summer. 

Next, Monday and Tuesday in addition to his normal Chemo and Radiation routine Kent will be including two Doc appointments. Monday he meets his medical oncologist in Grand Rapids and on Tuesday we will travel to Holland in addition to his radiation he will meet with his Radiation oncologist.  We will update at a later time as to what we find out in both these appointments.  We are a little unsure what will be discussed with the exception of the amount of Chemo and how that is going, the discussion of any changes we should make and maybe the symptoms he has felt including his daily evening headache. 

As we finish out this blog, again we say a huge thank you to all who have walked this journey with us, prayed for us and helped us in many ways.

- Leah.

 

It'll be your friend

During the last post I believed radiation would begin May 28.   This past Monday and Tuesday I had medical appointments. Monday was what the radiation world calls "Simulation"  This time Lydia joined me in coming to an appointment.  There is a booklet of information you get  along with a list of possible symptoms in this appointment, then you are asked to sign this document as a consent to treat.  The nurse who started the process of simulation, showed me where R&R rooms are and where the treatment waiting area is.  It is a small room with 5 chairs and 4 changing rooms along the outside walls for if you are not prepared enough for treatment clothing wise. (no metal on clothing)  When my name was called, I followed a  man back to a room where they would be doing my "mapping" CT scan.  I figured this would be a fairly run of the mill CT scan.  I wasn't entirely right with my expectattions.  My Radiation therapist verbally gave me a lot of information which gave me a good picture of what to expect.  I was then allowed to lay down and get in "my position".  Once they were happy with how I was lined up they drew 3 dots on my skin.  One on each side and one on my abdomen.  They taped over these before the scan took place.  They wanted me to have IV contrast so since I have a port that has 12 week time period on it I have them use that to bump my date out another 12 weeks.  The nurse came in the room and went to access my port.  I always ask for a warning.  I thought she hit my port but I knew that one hurt more than usual.  Come to find out she missed my port on the first try.  The second try she hit my port but could not get blood return.  Since they are not allowed to give me medications (including those needed to unclog my port) they could not use my port.  They tell you that your port will be your firend.  I do not share this sentiment so when this happens it sours my already poor opinion of the port. The third poke was an IV in my left arm.  I should have just had them start there.  The CT and contrast went as expected following that.  

When my CT  was completed the Therapist needed sign off from the doctor to make sure they had what they needed in order to complete the mapping.  When he got the nod it was time to make this a bit more permanent.  They took the tape off those 3 dots they made earlier and then they tattooed them afterwords.  I never tought I would get a tattoo but now I have 3.  Following the tattoo I sat up and then discussed scheduling.  Due to me needing an emptier stomach I will need to not have food for at least 2 hours before radiation.  I asked if they had anything at 4. They responded that they had a 4:15 slot starting Monday June 3.  That seemed enough after lunch and late enough in the day I should be able to work.  That was the end of my simulation and I was allowed to return home for another 2 weeks.

Tuesday brought my Chemo education and since my port wasn't working I had to get stabbed 1 more time to get my port flushed.  Leah and I got to Lemmon Holton to talk with the education nurse.  It was 20 or more minutes past our appointment time when we got called back.  Again I got thrown a lot of information and took pretty good notes.  For most of the meeting it seemed the nurse was sugar coating it for me.  When she was almost done she stepped out to talk to my insurance to find out about getting my chemo filled.  One of my chemo nurses from 11 years ago stepped in to do my port flush.  When she was done we picked her brain about what and how to do this to be tolerable.  She suggested taking Zofran 30 minutes prior to the oral chemo  I wrote that down in my notes for future refference.  

I was told by the education nurse there was a specialty pharmacy in California that needed to fill my oral chemo.  We were told to expect a call from them.  

Over the next two days we received calls from the pharmacy in Cali.  They also did their own version of chemo education.  This nurse suggested taking zofran 45 minutes prior to taking oral chemo.  Again Noted.  On Tuesday we were told the cost of the med was $16,000.00 per month. The pharmacy said they needed a card for my $20 copay.  I am thankful I'm not paying the full cost of the med.  Once almost done they asked if me having it delivered to my home on Thursday the 30th.  I said that would be sufficient and got set up for Email reminders for refills.  

Today I started laying out my Treatment days from exactly when I take my normal meds to when I need to eat to when I need to take Chemo.  The next step is to begin the process to see how I am tolerating all the treatment.

I ask while I am in this treatment process for prayers of no side effects and normal daily routine.  

Kent

Get the laser started.

Since the last post I have had 2 appointments.  On Tuesday this week I met with my General Surgeon who performed my Hernia repair.   He looked at my incision and said it looked good.  We talked about many things including what the mesh suture was actually and also we discussed how much time for healing was a good balance between his normal request and that for a person livng with cancer and needing treatment.  We decided the original 6 weeks he requested was a fair request.  This means he would like no less than 6 weeks before and treatment to allow full healing as treatment would prevent my body from healing.  At the conclusion of the appointment he stated if I needed him for anything to be sure to reach out.  

Today I had a consult with another Radiation Dr..  As I mentioned before I expected a meeting similar if not the same as the last.  Today seemed to go very different in many respects.  The doctor went over my case from 10 years ago all the way through to today and then asked what we knew about radition after having met her coworker in March.  We encouraged her to repeat anything he might have told us.  (Honestly I was in the March appointment with a different frame of mind and not really knowing what treatment I wanted to pursue.  As of today I am confident the option of another surgery is not an option and we need to prceed with Tumor Board's recommendation.)  She clearly talked about the process of radiation and explained it would be roughly 30 treatments which would end up being 5 - 6 weeks consisting of 5 days a week.  We asked questions like, Will it impact my daily life? Can I go in the sun?  Do I need to stay away from young children?  When we asked if there was anything we weren't asking she said,"I think you are asking all the right questions".   The answers to the two following questions are yes,   The treatment is an internal treatment versus an external radiation and therefore I am safe  to be aound young children and in the sun.  She also shared, she would not recommend this treatment if she was not confident it would work for me.  We both left the appointment feeling good about the doctor and about the process.  As it stands we need to make some decisions.  1.  Where would we want to have treatment.  (Ill explain this in a minute)  2. What time of day would we want the treatment to be.  As for the location,  she works in both Grand Rapids and Holland, and for several reasons but mainly if there is a need for Leah to have to drive I can have treatment in the Holland which would make it easier for her to be in that location.  I will  need to decide in the next couple of days as to where I want to continue treatment in order to continue with the current timeline.   They will want you to have your Mapping CT scan done in the same location as your treatment.  The same day as the CT they do education for the treatment so that will happen

What I do know is my treatment will start Tuesday May 28.  

We have not fully decided on a location or time yet.  I have an appointment with my Oncologist Monday  Morning during which we'll discuss the oral chemo I'll be geting along with the radiation treament.  After that appointment we'll call my Radiation doctor's office to confirm location and time of day to proceed with treatment.

Stay tuned for another post next week.

~Kent

A note from Leah...  Kent has been amazing during this whole process.  I am so proud of him.  The days of Surgery, Chemo treaments, Doctors apointments, tests, pokes he has remained calm and rallied through everything.  He amazes us, his family.  Everything any medical professional has asked he has done.  We are thankful for all of you our prayer warriors who have prayed for him as he has gone though it all. 

During this Month of May while Kent has some healing time we are thankful Lydia will be home and will be able to share some family time before she leaves for her internship at Camp Geneva on May 29 as a Camp Counselor and Kent starts treatment one day before Lydia leaves. 

Again Stay tuned for further news as it becomes avalible to us....

Return to work?

Thursday was 7 days since I was in surgery.  A lot has happened in a week.  The main thing was that my case was brought before tumor board Thrusday AM.  I got a call from my Surgeon's PA regarding what tumor board had to say.  

They had 2 recommendations.  First they recommended Radiation.  I meet with Radiation on May 3 to discuss what they have to say.  I don't expect a lot different than the previous radiation conversation as not much has changed since that conversation.  They previously recommended 5-6 weeks for 5 days a week.  I suspect the informatio will be similar if not the same.

The other item tumor board recommended is genetic testing.  I had genetic testing 12 years ago and I don't remember if they found anything other than that it was colon cancer.  I'm willing to go through it again, however I don't think they're going to find anything unusual.

Monday I have my post op appointment with my surgeon's office.  I think the only other thing left that I need from them is the "return to work" form.  I know they are willing to put a date on it that I feel like I can handle so likely early to mid next week I get to begin working again.

My post op appointment with my general surgeon on April 30 so he can get a good look at his work and see that things are healing the way they should.

I'll write more here as things unfold.

~Kent

Mi Casa

Today I was discharged from the hospital.  At 8 this morning i saw my surgeon's coworker.  The big questions have always been "Did you pee?" and 'Did you fart?"  This morning was no different than the others.  Today my answers were also the same, yes and no.  It was a little while later when I got up for something and it happened.  I notified, Leah and my nurse tech who notified my nurse... That was supposed to get to the doctor. Later in the morning when I asked about discharge paperwork it got back to me that the doctor had not been informed... 

Soon after the Doctor was informed and then we knew we would likely get dicharged but didn't konw the timing. By church time Leah ad Lydia were in the room so we watched church together and then started the triathalon to keep things moving.  All total today We walked 8 laps or more around the unit itself and then walked 2 different laps around the same floor of the heart center.  We were told by my nurse tech yesterday not to look into those rooms.  She's right.  I like those  rooms but I'm not sure I want the procedures that go along with those rooms.  Final conclusion is 7N needs an upate so it's brighter.

After we finally returned to the room it was in the middle of lunch time.  Not knowing if I should order a meal or not and how things were advancing I wrang the nurses through the button and asked for Crystal Light and ice cream.  I expected to see my nurse tech who was the one I usually saw and today in walks my nurse with discharge paperwork.  She asked do you want to leave.  I feel like we all shouted, " yes!" at the same time.  She followed up asking if I still wanted the ice cream and Crystal Light.  I opted for the drink to go.  She brought both since waiting for transport can take a while.

I finished the ice cream and had gotten through some of the drink by time my wheelchair arrived.  Then it was  time for the final wheel out to the parking lot, I was helped into the car and then we took the drive home.  I'm glad to be home and I feel realy good already.  I don't feel I even need pain meds but will probably take them for a few days at minimum for a precautionary reason.

I  want to get back to normal and I'm sure that will happen soon enough but I don't feel much different that I did going in 4 short days ago.

I want to take this space to thank everyone for their prayers and tell you they are greatly appreciated.  I'll also be honest in saying I feel like I need them now more than ever. I know God has a plan and that it's going according to his plan.  I would really love to know why this is the plan.  I don't love the treatment options left for various reason but mainly for the time it would take to make that treatment (potentially) successful.

There is good news in what we found post surgery talking with my surgeon,  She pointed out that since my last treatment ( Nov 23, 2023) nothing has either grown or is new.  That's almost 5 months with no growth.  I get nervous with a pocket of cells hanging around just in case they are still taking a vacation.  Needless to say we have a big decision in the next six weeks and I hope the decision is made clearly and I feel peace about it.  It's a good thing God has 6 weeks because right now I am a bucket of nerves.

~Kent

"Hungry Catterpillar"

Yesterday surgery was scheduled for 9:30 am.  It was about 12:20 p.m. when I said goodbye to Leah and I wheeled into the OR.  I remember about 10 minutes in the OR, in regards to getting on the table, putting my arms down and then about a minute or so later the fog hit me.  The next thing I remembered is meeting my family in my room where I was staying the night. This was about 6:30 p.m.  In the OR I was gifted with a few things including a new IV in my right wrist and and NG tube in my left nostril.

My first question to my family members was "did they do the whipple procedure?"  It was at that point I  discovered that 3 surgeons were unable to remove the cancer.  The explanation I was told is that it would put me in more danger and I could have possibly not make it back out of surgery.  I did have the hernia repair done at the close of surgery using the "Hungry Caterpillar" stiching as Leah calls it.  

It is now April 12 and alomst 24 hours after the close of surgery.  I have had the chance to chat with my Oncology surgeon and she told me what she told my family yesterday.  They worked with the upper portion of the intestine and the colon, but only for repair purposes.  Bascially moving forward with the procedure would have cut off my blood supply to the portion  that is left of my liver, therefore causing liver failure.

Where we go from here?  I'll be honest in saying we really don't know what is in the near future.  We have thrown out several options for future treatment and we'll just have to sort them out and decide at a later date. The surgeon who fixed my hernia said he wants no less than 6 weeks of recovery before another  treatment begins.

~Kent

"I wanted to meet you"

Today I had a consult with General surgery.  I looked at this appointment as mostly a handshake or formality since the surgery is on the Books.  The surgeon I saw today specializes in hernia Repair.  When he walked into the room he said to me "I wanted to meet you" then he started by introducing himself and then asking about my case.  He does Hernia repair part time and works with another department of surgery the other part of the time.  All this to say is he is very knowledgeable in his field and usually trains others on his techniques.  He showed us the hernia on the last CT scan I had and explained how they usually fix those.  First Method is to place a Poly made mesh screen behind the muscle and tie the muscle back together in the middle.  The second method is to use a mesh stitching for the sutures to close up.

However this depends on Schedule as he has 2 other cases on Thursday and also he doesn't know how surgery will go.  In other words if there are complications with surgery and they feel the need for follow-up procedures then They may opt to not do hernia repair now and schedule that for another time.. 

General surgeon will make a decision (which is best for me) in the heat of the moment when I'm out and unable to make a decision.  Today we discussed what might happen Thursday and future treatment options.  One thing we did hear that was new information was that I will be spending at least 1 night in the 4th floor heart center due to the amount of Care I will need post surgery and the fact that nurses there are 1 nurse to 2 patients not 1 to 8-10.

I believe we had all our questions answered and are comfortable with his options for Thursday.  It was good for both Leah and I to be at this appointment which possibly could not have happened due to the time.

Regarding Thursday, I appreciate all your prayers for the surgery, surgeons and healing.    I hope they can effectively remove all the cancer.  

Check back for an update on how I am doing Post Surgery

~Kent

T - 5

Yesterday I received a call from surgical staff.  The purpose of the call was to inform me of the time for my surgery and go over the checklist of all the details like what meds I should conintue to take and which I should discontinue before surgery.  One of the questions was "has anything changed since your last Pre-op"  I just got off my lifting restriction earlier this week.  Other than that not a lot has changed since the first surgery.  

They informed me surgery is scheduled for 9:30 A.M. and in the time frame of the OR or the hospital Honestly we're not sure what time surgery will actually be. There is a lot to be done so hopefully if there is someone on the schedule behind me they don't get bumped.

I have already Completed my CT scan and blood work for the surgery.  One final thing that I need to do prior to surgery is to have a consult with the General Surgeon who will be doing the hernia repair portion of the surgery.  That appointment is on Tuesday at noon.

Otherwise we are livng each day with hope they are able to effectively get rid of the cancer.

~ Kent

Calling all Surgeons!

It was 5 days ago I wrote my last post about my Oncology Surgeon trying to get on the same schedule along with a General Surgeon.  This past Monday I got a call from General Surgery who wanted to do a consult on April 30.  With my surgeon's pending maternity leave that timeline wasn't looking good.  I expressed that I was orginally scheduled on the 11th and I really needed a consult sooner.  They didn't seem to have anything sooner.  I accepted the appointment on the 30th and then called my Oncology Surgeon's office.  I told them what General Surgery had to say and asked what the options going forward were.  At that point I was willing to "cut out" General Surgery and deal with that at a later time. 

Fast forward to Yesterday.  I got a call back from my Oncology Surgeon's office stating she would be calling General Surgery to talk with them about the timeline.  Later that afternoon I got a call from General Surgery saying they had talked to my Oncology Surgeon's office and they wanted to schedule my new consult on Tuesday April 9.  I was pleasantly surprised and curious what this meant for my surgery schedule.  I again left a message with my Oncolgy Surgeon's office inquiring to the scheduled day of surgery.

Today I got a call from the RN at my Oncology Surgeon's office confirming the surgery date of April 11.  I had the opportunity to confirm some other things I needed to do in prep for surgery.  So in the next 2 weeks I need to do labs and also I will be called to complete a CT prior to surgery. 

As we wait 2 weeks until the surgery date, we ask prayer for health and calmness and the best possible outcome.  We thank all of you all for your love and support for all three of us at this time. 

Kent

 

Let's compare schedules!

Yesterday I received a call from my surgeon's office.  The RN told me that potentially my surgery would be on April 11.  This is only if general surgery is able to assist on that day.  If they are not able to assist then the surgery will be scheduled for another day yet to be determined.

Why general surgery you ask?  Leah's post titled "Sunrise, Sunset" explains the need for general surgery.  in my previous surgery the surgeon "removed roughly 6 hernias" so they will need to be available for hernia repair per my surgeon's offices explanation.

The only other things I know I will need to complete are another CT scan and bloodwork.  When they call to confirm the Date I will make sure to confirm all the specifics I will need to know prior to that date.

So now we wait for the surgeons to get their schedules compared and agree on a day 

Rinse and Repeat.

 First off I need to apologize for not writing in so long.  3 weeks ago I was about to have a Radiation appointment and was asking for clarity from that appointment.  I was also asking for "clean" test results regarding my PetCT Scan I was about to have.

On Thursday the 29th of February I had a PetCT.  This was a fairly run of the mill test nothing out of the ordinary on the day of the test.  I was excited to return to a normal eating schedule following the test.  Other than that the day was normal.  We began the wait until the resutls came in.

Tuesday the 5th of March we had a consult with a Radiation Doctor.  I had been on the floor before but never knew where the door was.  I went up to the desk where I am used to going for my scans there and they pointed me to the door.

We had a full conversation with the Doctor who explained how radiation would go and what my potential schedule would look like.  He reiterated the same sentiment that my sourgeon has before that his treatment would be something done after we completed surgery.  We took note of things and left the office without having a clear decision forward.   We had gotten the PetCT result just prior to that appointment.  The reports can be kind of technical when it comes to medicine and even though I'm no expert at them however I've gotten pretty good at know what certain key words mean.  This one was a bit confusing to me so while in the appointment with Radiation, I kindly asked him to put it in English.  He repeated the one line in the report I already understood and that was "No evidence of new disease...."  This means they couldn't find any new cancer through the scan.  So we are currently treating what was left from the surgery.

There were several opinions floating around as to what method of treatment we should do.  The only concensus was radiation would follow any surgery that would happened.  Surgery was the treatment that dictated what else we would do and in what order.

Last week I called to schedule another meeting with my surgeon to discuss this potential surgery.  Fast Forward to today, I had a call scheduled with my surgeon.  She called a little later than was scheduled but I imagine she was busy in the office as she spends plenty of time with her patients.  Today was no different.  The risks already mentioned were possibility of a leaking bile duct.  She mentioned that my percentage for this is really low.  Due to the stent in my Bile duct it should be thicker than normal so the leaking would be much less likely than in a healthy person.  The long term consequences of a bile duct seem much more of a reality.  Due to a Bile duct reconstruction and restitching the risk is scar tissue may close off the Bile duct from draining.  If that happens either Endocsopy or Radiology will place a stent back in the new bile duct.

I specifically asked her if systemic chemo would reduce the risks she was talking about.  She clearly said no.  She said that I had had enough chemo with very little change to the tumors ( conglomerate of lymph nodes).  She confirmed the cancer being in lymph nodes means it's in the lymphatic system and could show up some where else microscopically.

The only other thing to discuss with her was schedule.  She indicated at the time of my first surgery that she was in her 3rd trimester of pregnacy. We were excited for her , but this now means she would be on maternity leave starting in May.  

So the consesus now is surgery really is the best most effective option.  Followed by either Sytemic chemo or Radiation to follow for anything left over.  Tonight over dinner we talked about surgeons (which one we would move forward with) Our Surgeon 10 years ago or to have our current surgeon before maternity leave and possible schedules.  The next steps will be to let know those that need to know inculding the surgeon's office and follow their steps 

More here as details get finalized.

~Kent

Directions please!

Today is 15 days since my surgery, meaning I am just inside 2 weeks since my surgery occurred.  Today was also my post-operatevie appointment with my surgeon.  We talked about just about everything regarding my case including what the room divide was like at tumor board.  There were so many options presented today, so the easiest way to present information is what facts we were presented.

First off I will be having a PetCT scan on Thursday to see if cancer is lurking anywhere else we don't expect.  We obviously don't believe there is any more than in the Portal vein area but different results would dictate a path forward for us leaving us little choice.

There are two routes we were presented today.  

First option would be to go through radiation which would include oral chemo.  The way my surgeon explained it is surgery and radiation are both localized treatments and they would be compared apples to apples so to speak.  The up-side for radiation is that it would not have the risks that another surgery would have.  I know what I've been told about radiation however nobody I've talked with is an expert in radiation.  I have a consult with a Doc from radiation-oncology next Tuesday.

The Second option is Systemic Chemo.  We know the ins and outs of this treatment however this is a Systemic treatment not just a localized treatment as radiation is.

We were also told another surgery would be possible.  The caveat here is that there are complications that can come out of such a risky surgery, some of them being a leaking bile duct or drainage problems from the Stomach into the small intestine.  Some facts around surgery were that radiation would make surgery more difficult.  Outside of that this really is a balance of what risks am I willing to take

I am wanting clarity out of the radiation consult on Tuesday.  

Prayers for that and for "clean" PetCT scan results are appreciated.

I'll post more as other appointments pass

~Kent

8 Days

I have been home for roughly 8 days.  A lot has happened in those 8 days including my first drive (to the car wash of all places).  If you know me you know I love a clean car.  Since I was driving, and I needed a destination, and I thought the car was dirty,  I decided to make the trip to the carwash during rush hour.  Not the best time of day to go I do agree, but we made it there and back all in one piece. 

Although exciting the drive is probably not the biggest news of the week. That news came yesterday.  Tumor Board meets on Thursday mornings first thing and is a group of people consisting of Oncologists, Radiation people, Surgical Oncology Doctors ( I.E. my surgeon).  I got a call from my surgeon's office around 10 am Thursday in regards to that morning’s Tumor Board.  I wasn't expecting the call so I wasn't able to process the information fast enough to respond with questions but I will have opportunity to ask questions later.  They had a large discussion on my case with many opinions.  The suggested treatment path forward is Radiation along with an Oral Chemo.  I will meet with many people to ask all my questions and get my treatment plan solidified  1. I will be referred to have a PET scan.  2. I will be referred to have a consult with a Doc working in Radiation. 3. I will have a post Op appointment on Tuesday with my Surgeon.  There is an option to remove the rest of the Cancer Surgically.  However we don't know what that would look like post-surgery and having just been through surgery, I don't know how badly I want to jump into surgery again after recovering from this abdominal surgery especially if they reroute the plumbing.

Obviously this brings more questions than answers and feels a little to me like were starting over.  Same disease different treatment and once again I don't know how it looks or feels.  Needless to say I'm eager to get consults done so I can start getting answers as to what my future treatment looks like.

~ Kent

I couldn't catch up to you.

After 3 and 1/2 Days in the hospital, I am finally home.  I've had more pokes than I can handle and between the last 2 days I walked almost a mile round the halls in my unit.  On Wednesday I got brought through the heart center (attached floor) due to the goal of walking a half mile by my day nurse.  Overall I had a great room with a great view.  The sleeping routine left a lot to be desired. 

I pushed myself as much as possible to meet and surpass markers I needed to meet to get out of the hospital.  If it were up to my day nurse I would have met one final marker.  I still haven't met that one and I'm home which tells you it wasn't up to her.

My surgeon was doing rounds today with her nurse during which I was walking the halls.  I met her and her nurse on the other side of the unit as my room was located on.  She claimed I was walking to fast and she couldn't catch up to me. With how fast I was walking, I find that hard to believe.  Never the less,  Doc, Nurse and I had a conversation in the hallway, after which I continued to walk.  I made another lap around the unit and Doc and Nurse were chatting outside someone's room.  I stopped and moved closer as I still had another question.  I asked if my case was discussed at tumor board this morning.  She said no and that my case would likely be discussed next week.  I was told earlier that her nurse would stop by to schedule my in office Post op appointment.

After I completed my laps and returned back to my room for a while.  My Surgeon's nurse came by and talked with me about everything I should be doing after getting home from the hospital.  She had previously scheduled my post op appointment and I requested she change the time so Leah could go with me to that appointment.  That appointment is on February 27th.  I'm sure we talk over what was discussed at tumor board (including what future treatment plan is), Look at my incision, and talk about return to work.

Overall I'm disappointed my surgeon wasn't able to remove the whole tumor.  After the explanation of why, I respect her decision and why she was not able to do so.  So according to what she had to say earlier this week the next course of treatment might be Radiation.  As was hoping to finish this process with a few treatments of Chemo, this so far looks different than what I was expecting.  So of course there is a small amount of anxiety of how future treatment will go and that there is even future treatment

I'll keep healing in the next several weeks and will post more here after my post op appointment later in the month.

Sunrise , Sunset

The day is here! Kent and I woke up, got ready and were chayffeured off to the Hospital! We rode in the wee hours of the morning or close to Sunrise.  

Kent and I walked into the hospital to the 2nd floor, we checked into the surgical registration area.  Kent was banded and I gave my phone number for updates, we then moved to the waiting area.  Then were called back a very short time later.  A very bubbly nurse greeted us and as we walked back to the first holding area.  We had a short conversation as Kent was getting some pre -op requirements done.  We shared our Faith.   Let me share , Kent was just about to leave the holding area she asked if it would be ok if she would pray for us.   I said, "Yes!"  She said,  "I am not that great at praying out loud." She wanted to share what she thought we needed and she said words that were exactly what we needed at that time. 

We then were brought back to the second intake area.  Kent recieved his block, met with anesthesiologists, the doctor and nurses who were helping with all of the above. 

Many who know us know we have a family friend who is a chaplian in the hospital.  It was not her day to work but she arranged her coleague  to meet and pray with us and yet again we were covered in prayer in the intake area!   A blessing.  Kent did great during the block, defintely uncomfortable.  He was also given some meds to relax him.  Kent and I were in this area for just over 2 hours.  We are unaware of why we waited so long? An unavalible OR? a surgery the doc had before us? waiting for nurses to get out of another surgery? We weren't sure.  

Surgery was set at 10:05 am and Kent was taken back to the OR at 12 pm.  I squeezed his hand, gave him a kiss and gave him a pep talk as he was leaving. " You got this! Well fight together!"  

I weaved my way back through the OR coridors and found the family waiting room.  I sat down in one of very few avalible seats with all my belongings and waited.  Kent's family joined me a short while later  and we began the wait.  We sat there visiting with one another.  We took shifts and I grabbed a small salad but I just didn't feel like eating.  We took shifts to ensure we would not miss any updates on Kent.  His Surgery was anticipated to be 3 to 5 hours but shortly after 2 and 1/2 hours we were give a call saying that he was ready to begin the ending of his surgery.  I was shocked. 

As I learned he was nearing the end of surgery I began texting family and friends. As  soon  we would be we talking with the surgeon I would be sharing what we found out. 

A short time after the phone call we were invited into a doctor waiting area.  She greeted us and sat down shortly after.  Sharing what she had encountered.   Here we go..... Kent was opened up, The doc removed roughly 6 hernias to even get to what the needed to to look at the tumors.  She then found a 6 CM cluster of tumor lymphnodes  on the left side of the portal vein.  She removed those.  She then said, "There was no cancer found on the liver, or surrounding organs."  She then looked at the right side lymphnodes hoping to be able to remove those as she did with the left but was not able to as the were not easy to remove.  Her words were, "Its not apporpriate to remove those tumor that way on Kent."  It would require a lot of surgical procedures that wouldn't work for him.   Kent will be facing radiation at a later time.  I am not sure on the details with this as it requires the surgeon meeting with the tumor board.

We all then returned to our seats as Kent recovered.   We then would be allowed to see him in his room.  

I then found Kent's family and I our way to 7 N to room 7018.  As rounded the corner  Kent faced me and he began to cry.  Kent then greeted his family for a very short time.  Kent was a bit nauseous, groggy and had several nurses around him.  

As I greeted Kent I learned he had a private room, with a view.  Lydia joined us roughly at 6 pm and she looked out Kent's window and as she did it was a beauiful Sunset.