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