New Doc, New Meeting, on their way?

Wedensday at 10 p.m. I had my last bites of food in prep for my port placement happening Thursday morning.  Thursday I got up as late as I could possible and manage in order to leave and get to the port placement building on time.  I got dressed and ready to go,  then we all got in Lydia's car and she drove us out near Cascade Meijer for the port placement.  The procedure was pretty run of the mill.  Get a bracelet, bed, one of those cute airy gowns and grippy socks.  Not even the good grippy socks!  Listen to me medical suppliers, the patients of the world want Purple Bear Paws socks.  They are the best.  The grey or brown ones just don't cut it.  After I got changed the nurse came in and explained what the port was and how you could feel it under the skin.  It is literally a pin cushion under your skin with a long tube that goes over your collar bone and into the superior vena cava. They showed you in this little interactive book where the outside was like your skin and the inside was the port with the tube into the vein.  The nurse placed my iv and then we waited for a little bit and got to talk with Doc before they brought me back. I got wheeled back to the hallway toward where I had to walk across to the procedure room.  I got on the bed, got a couple blankets and chatted with the two nurses who both prepped for the procedure.  They played my favorite music for me and when the time came they pushed meds for me.  It's there where my memory stops for a while.  The next time I remember was waking up in the bed where it all started.  I stayed my hour after as I slowly woke up.  As I woke up they then offered me a cup of coffee and a small pakage of a snack. I then was let change back into my own clothes and hobble out to the car.  I traveled home mostly alert but tired.  

When we got home, I settled in my chair and Leah stayed with me as Lydia ventured out to  find us some lunch as it was 1 pm when we we got home.  We decided to watch the film Ratatouille as we ate  and about an hour in, all three of us dozed off.  I slept for roughly an hour and a half,  When I woke up I was both sore and tired.  I put an Icepack on the procedure site and layed low for the remainder of the day and even turned in early for bed.  

Today (Friday) began as most weekdays should start.  Get up, Get meds and coffee and then work.  I worked until noon since we were given a half day due to the Holiday Monday.  I still cannot get my port site wet so I began the process of covering that with Press and Seal and then taping it to my chest.  Not the most fun thing but I've had several years of practice.  After my shower we had lunch and then Leah and I made our way to Lemmon Holton for Chemo education.

When we got there we filled out paperwork and then I was called in to get labs.  Labs on a day like today I was not used to since I was only there to chat with people.  Come to find out they are checking for Hepatitis.  All that aside, today I met with three people.  The first was a NP whose job it was to talk about all the Chemo drugs I will be on and their side effects.  The drugs I will have will be the same and the sideffects can be the same or similar.  They told me they will be quicker to provide meds to conteract side effects like  Nausea or Pain.  When she was done prividing us with information she asked if I had any questions.  I brought up the Dr. Transfer request I had started on Monday.  She said she would make sure the paperwork was filed.  

The next person I saw was the Care Coordinator for the new doctor.  She was beginning to talk about the things I needed to do as far as eating and drinking.  We also told her about the Doctor transfer.  She talked with us a little about the 2 oncologists teams and she mentioned she really liked the New doctors PA and mentioned the PA's Name.  I got a big smile on my face since this PA was the one I had back when I started with my first Oncologist 11 years ago.  So not only a highly recommneded Oncologist but a PA I'm super familiar with.  We also talked about the Chemo schedule we wanted and what possible days we could start.  While I don't have a firm schedule yet we said we wanted to meet the Doc prior to treatment.  She left the room and let the next person come in.  Part of the way through that conversation she popped back in the room and asked if we would be willing to meet the new Doc on June 1.  Some of you may know the significance of this day for our family.  10 years ago on June 1 Leah's Dad died.  I was getting My chemo pump removed that morning 10 years ago.  So clearly we didn't want to begin chemo that day,  We told her we would be willing to however meet the new Doctor on that day.

Then, the financial person talked about the cost of the drugs and looked at my specific situation and noted that at least for this year I would not have much more out of pocket. 

Overall today I had hesitation going in.  At the beginning of the day I still didn't know anything about seeing my new oncologist.  Through our meeting, we heard everything but "you are accepted by the new doc".  Everyone was confident I would hear that likely by next Tuesday.  I'm expecting a meeting with him on June 1.  I'll need to sign a consent to treat form and then likely the treatment will start a week after that.  Our schedule will be Thursday through Saturday again.  That will give me all day Saturday and all day Sunday to recover from the 2 days of treatement.

Prayers requested that this new Doctor meeting goes well and that when Treatment begins that it is with minimal to low side effects.

~Kent

Ring Ring. May I please speak to Kent.... Pt 2

 As yesterday the orders went in today the calls were made.  Each and every time they said "May I speak with Kent".  What I really wanted to say was "well you called his phone number so don't you think then you could talk to him".  Instead, each time I told them it was me they were talking to.  The first call was for the PET-CT.  This is scheduled for June 10 which about 2 weeks from now.  As I stated yesterday this will look for Cancer activity in the Chest, Abdomen, & Pelvis.  The CT of the same area didn't find anything so we hope and pray this test also comes back clean.

The next call was for scheduling Chemo education.  This is scheduled for Friday afternoon.  At this point I'm thankful my office is closing at noon for the Holiday next Monday.  This appointment is like information overload.  Everything you would want to know about Chemo from the Drugs to their side effects to financial cost and and other resources that are available to you.  This really is your opportunity to find out everything you should know.  In fact they encourage you to have a couple people with you to be other pairs of eyes and ears.

Next up the call to schedule to Port placement.  Of course the oncologist was nice enough to mark this as urgent! Thanks so much for that.  Of course they had an opening tomorrow morning.  When I mentioned I had an appointment with my PCP they suggested I change that appointment since this was marked urgent.  So tomorrow against all my desire I am going to have my port put back in.  This means every 6 weeks or sooner I need to have the port accessed and or flushed.   I never really counted before however I do remember times I was done with Chemo, I had to make an appointment just to flush the port.  As you can tell I'm not excited to have the port back again but its part of the package and I was told if the Cancer came back I would need one put in again.  So here it is, They told me so!

The only other call I got was from the nurse for the port placement.  So as of tomorrow I will be Re-Ported.

Prayers are requested for nerves and anxiety as I go through this again.  Also continued prayers for the Dr. Transfer to happen quickly.

~Kent

Familiarity in the traumatic circumstances

Today we met with the Oncologist I met in the Hospital last week.  I wasn't super excited about him the first time for reasons I'll leave unmentioned.  Today turned out to be more of the same.  What I skipped over is, Yesterday I called the office and started a Dr. transfer to another Oncologist in the same office.  As of today that has not been completed and I was told yesterday that can take a week or so.  

In the mean time I can get to the details we heard today.  They will do the following in no particular order. 1. Pet CT scan ( to find if the cancer has spread anywhere)  2. Port Placement ( this is what they use to deliver chemo) 3. Chemo training  4. Begin Chemo treatments.  After several treatments they will refer me back to a Surgical Oncologist for surgery to remove the mass.  For many of the things in this paragraph, someone will call me to get these things scheduled in the next several days.

Speaking of Chemo, what treatment the oncologist talked about today was FolfIri with Avastin.  This seemed all to familiar as this was the treatment I ended with when I stopped my treatments around 9 years ago.  Finally something I know and know how it goes.  It's a little weird but even in the traumatic circumstance the familiarity is slightly comforting.  Even if it is the kind of Chemo you get.  It feels a little like I've been here before and know how it goes.   Although not all the familiar is comforting.  Today when walking into the office suite I was very nervous.  I've been here every year for Leah but not for me and not for Cancer.  Mentally it's a whole different feeling and honstly a lot of the sights, sounds, and faces are the same.

When we got home I worked for a little while and then a Pastor we know, stopped by for a conversation and Prayer time.  It was good to talk with him and join him in prayer for our family and the situations each of us are in.

So for the current time I would ask for Prayer that this Dr. transfer is accepted and quickly.  I would also ask for Prayer for the treatment to begin smoothly with minimal to no side effects.

I'll write more here when I start getting things scheduled.

~Kent

Walking in Circles

Today was a good day.  It consisted of sleeping in for me which seemed like it was much needed.  My previous routine was to get up, get meds on board and then get straight into a cup of coffee.  That all changed since my stay in the hospital.  When I got home I discovered I was having Acid Reflux issues.  So my diet stayed back to more like what the hospital was giving me.  Since my gall bladder was stolen last time I had cancer,  I have been on a regular regimen of Cholorestimine in Orange Juice.  The medicine is orange flavored so I was recommended to have it in OJ since I started it.  This allowed me to eat whatever I wanted. Since I have been following a low fat diet that med slowed things to much.  So yesterday and today I opted to skip the med.  First off the OJ would play havock on the reflux. Today so far the food intake was a Granola bar, French toast & eggs & Chicken Sausage, later I had another granola bar.  Thankfully today my stomach feels good.  It feels a lot better than the last couple days.

Today we ran sprinklers on the yard, Picked a few weeds, and went for a walk around the neighborhood.  Leah even snapped a few photos durng the day including the walk.  I don't have normal energy level and I don't know if that emotionally changed or if the physical is catching up to me.  A slow walk felt good but it was good to get back home to. I knew we weren't going to far since Mirnada (our old pup) was going along.  We stopped to water someone's yard but She walked in circles since I was trying to keep her from doing her business.  Later we stopped to fertilize someone elses yard.  Yes I clean up after her so It didn't stay in the yard to long.

Tuesday is my next Doctor appointment.  Please pray for the right decisions to be made surrouding that appointment.

~Kent

A.M. Newsflash!

Today began hesitantly for me.  I was much to comfy in my own bed getting sleep I had not gotten in the Hospital.  I finally got up and got started as today was my first day back to work since last Friday.

Leah called me from her work this morning shortly after I dragged myself out of bed.  She stated that my email said I had a test result.  I actually asked if she wanted me to check it and she said "yes while I'm on the phone with you".  I read through the report and long story short it revealed that the mass was Colon Cancer.  That wasn't exactly the news I wanted even though it is what we all started thinking beginning Saturday.  Leah kindly offered to come home to be with me.  I felt we need consistency at this point so I said I would be fine and that she should stay at work for her short day.

Last night I discovered I was also having Acid reflux along with all this.  This seems to be consistent with High stress or traumatic times in my life that this occurs so it kind of makes sense this would show up now too with all the news I mentally have been dealing with.

As for now I have an appointment with an Oncologist on Tuesday the 23rd.  I'm sure he'll discuss treatment options per discussed at the GI Tumor board where my case was presented today.

Today I also got a call from someone from my Spectrum Health regarding my Hospital stay.  I expressed my concern with some of the doctor options I had. While I didn't get a lot of answers I did hear often "is there anything we can do to help you?" and "do you feel your support you have at home is good?"  I think that's pretty obvious for anyone who knows me.  I have a ton of support at home.  I'm sure this time will be similar, but last time through my journey I had people I didn't know come up to me and tell me they were praying for me.  Some days I'm sure that's what was getting me through what I needed to deal with.

So now our job is to find the GI Oncologist we're happy with being in charge of my treatment.  So until Tuesday,  prayer is requested for guidance as we continue to find the best medical team we can find for my treatment course.

~Kent

Blow the popsicle Stand!

Finally after 3.2 days in what felt like it could be prison on some respects, I am finally writing this from the comfort of my living room chair that I enjoy sitting in (usually in the evening).  Right now it is 12:05 pm and I have been home from the Hospital for about 30 minutes.  

This morning I talked with internal medicine resident he talked about Surgical Oncology not wanting to do anything in patient so I would be released if my liver results were trending in the right direction.  I saw the internal medicine doctor after my lab results came back and we chatted about the improvement in liver enzymes.  What this tells everyone is the stent that was placed Monday afternoon is successful and doing its job.  Later this morning a previous surgeon of mine stopped by.  He stated he thought this was not a tumor but rather an enlarged Lymph node.  There are 1 of 3 things it could be enlarged from.  1 metastatic Colon Cancer, 2 Some sort of Lymphoma, or 3 Simply enlarge from no cancer at all.  Obviously everyone is waiting to see what the results of the biopsy is.  This will tell us if this is cancer and what flavor of cancer it is or if it is not cancer.

If it is cancer he would opt to do a mix of chemo and radiation to shrink the mass prior to surgery.  

I want to be honest here.  Some doctors we have really great relationships with and others not so much.  Also my former oncologist apparently doesn't do GI tumor cancers any longer so we can ask if he would be willing to take my case but there is a new doc in the last 7 years that specializes in GI Oncology.  I saw him in the hospital.  At this point assuming this is Cancer we are lookning for the best medical team of Oncology and Surgical Oncology that works for my journey...  

All this is pending those pesy biopsy results.

A pastor and friend of ours reminded me that God gives us what we need for today and that we don't need to worry about tomorrow.  I'm not sure I would call what I have worry.  I would say I am very unsure about what my medical team would look like and that's the thing I really need to figure out quickly of course pending results.

~Kent

"You have a test result"

I saw plenty of people today during the day including oncology, and surgical oncology about the plan and mostly the consensus was we need to wait for the biopsy results.  I had 2 things that are noteworthy.  The first was from labs drawn earlier this morning.  One of the cancer markers they checked was really high.  Most people want to be off the charts but not me in this regard.  The other information I'm learning is that the Doctor who did the biopsy said this looked like metastatic colon cancer. 

The other noteworthy thing that happened today was a CT it was scheduled for 1:30 p.m and it was just before 2 p.m. when our Pastor and a consistory member ( a good friend) showed up in my room as did the wheelchair to take me to the CT.  My nurse talked with the person taking me down to see if they were staying or leaving after dropping me off.  She said, she was staying.  So it was a quick trip down to radiology and 2 passes through the CT machine one without IV contrast (just oral contrast), and another WITH IV contrast.  About 10 minutes later I arrived back in the room.  On the way back to the room I almost ran into an occupied bed and I wasn't driving.  This person told me not to say anything so If you know them I didn't tell you.  

When back in the room Leah and I had a great conversation with the 2 men from  our church before they left.  Later in the day Leah said to me "You have a test result".  She checks our email account and when MyChart sends me something they let me know by email.  The app itself notifies my on my phone. So I checked the result and it was the result of the CT.  The main purpose of the CT with oral and IV contrast was to find any other spots in the chest, abdomen, and pelvis.  From what I read they did not find cancer in any other locations than the Mass we discovered on Saturday.  

As of now we still do not have results from the biopsy taken from the Mass.

~Kent

And now we Wait.

 Since the last post (written Sunday night) I had been in the Hospital awaiting a procedure.  Monday (yesterday) I saw plenty of new faces all talking to me about the plan (getting the biopsy).  When I asked what day that would happen I got a lot of we're not sure kinds of answers or just simply passing the buck to another department.  The Doctor in charge yesterday did finally tell me scheduling started at 8 ( my convo with him was roughly 8:15)  He told me I would know soon if it was scheduled for Monday or if I could begin eating.  

I don't remember exactly how long it was but My nurse came in and told my Endoscopy was scheduled for 4 p.m.  I sat around all day waiting with no food and very little water .  I managed to get a couple sips with my medicine and Ibuprofin earlier  in the day.  I buprofin you ask, well the pillows in Hotel Buttorworth (again someone else's words) are horrible.  So sleeping on those for one night was enough.  Monday morning Prior to hearing anything I communicated with Leah begging for My pillow.   Later in the day that turned into pillow and blanket.

Around 2 p.m The GI person on the floor came and talked to me.  She told me I was scheduled for the Endoscopy and could tell me all about it but didn't know when I was scheduled.  I was able to give her that info.  Essentially they were going to do an ultrasound via endoscopy then take a biopsy of the mass and place a stent in the bile duct.  I loaded her with a hopper full of questions most of which she answered and some of whch she pointed to another department (a lot of finger pointing happening around here)  One piece of information she told me is my family could go down with me and talk with the Doctor once the procedure was completed.  My family showe up around 3 - 3:30 and as oon as the last one arrived so did the bed. It caught me a little by surprise I still had to slip on one of the Beautiful gowns they provide you with.  You know the kind that are light and airy in the back.  I got out of my shirt and pants and under layers. What you may not know about these shirts is they have velcro up one side so if you're connected to something you can still get them on or off.  Huge props to my Sister in-law for this design.  I'm told she thinks the hospital should give a kickback.  Honestly I think the hospital likes their gowns a little to much.  After slipping into the gown I got on the bed and received some warm blankets and then was wheeled down to The prep bay for the endoscopy.

The nurse loaded me up with leads and then got fluuids connected and then left.  Next came the anesthesiologist who talked about the kind of anestesia.  We had a few questions for him and he had a few for me.  Shortly after, He rolled me out and directed my family memebrs to another room on our way.  After saying goodbye to them he wheeled me through a set of double doors and then another to the left.  We played bumper cars getting in the room but I wasn't driving so I felt o.k. with it.

Once fully in the room I met my nurses for the procedure and the doc talked to me.  He quickly explained what was going to happen, Had me sign something and got started with Oxygen.  The mask the hold over your face collapses around your nose and mouth when you breath in.  I did this for what felt like less than a minute.  They told me they were going to push sleepy meds and seconds later your eyes feel super heavy and when you close them you are in nap land.

The next thing I remember is waking up in Recovery.  The nurse there asked about pain nausea and the like which I had some pain but wasn't aware af it right away.  I was there for over an hour since they were trying to regulate my High BP.  I told her it runs high so this might be on the normal side of things.  If you know about whit coat syndrome It's a very real thing.  Even if the white coat looks like blue scrubs.  She finally made a call to Doc on duty and I was permitted to go back to my room.

On my way back to the room I passed a family waiting area and I saw Lydia's face over top of the wall.  I waved as I went by.  The bed stopped in front of my room and I was asked if I could walk or if I wanted to be wheeled in.  At that point I wasn't super sure of my walking ability so I opted for the latter.  Leah showed up by the side of my bed as they were creating room for this bed to get next to my bed in the room.  What I failed to mention earlier was as we were getting ready to go down My nurse mentioned I would be getting a roomie while in the procedure.  There were enough long faces and questions why from my and my family at the time.  What Leah told me is that my Nurse did some string pulling to allow me to have the room to myself.  She came in later and apologized for telling a little white lie... Honestly she is a great nurse.  Props to you for the care you give especially to the small needs of your Patients!!!!!!

when situated in the room I got new Icewater, Orange Jello (3 of them) and a menu for later.  I was told clear liquids for 4 hours then a more regular menu at 11.  Honestly with the pain I had and the aftereffects of the procedure I didn't really feel like eating much.  I got 2 jello cups down and some water but I was done at that point.  After saying goodbye to my family I got some pain meds hoping it would help and turned in for the night.  I never go to sleep before 10 but last night I did.  I slept pretty good except for the things they need like vitals and blood draws.  

My blood draw at 6 am was what got me up today (Tuesday),  Now it's a hurry up and wait day.  In regard to my stay I will get to have anything I want on that low fat diet I'm stuck on.  Other than that I'm hoping to hear the biopsy results and I'm also told My oncologist will be stopping by.  Finally someone I know not that I want to be his patient again.  He's a great doc and Just chatting with him will be great.

Obviously the emotional part of this is overwhelming Especially not kowing what this really.  Prayers for Good results and Peace are what I'm asking for at the moment.  And of course when I know more One of us will post things here.

~Kent

A familiar but undesired hallway.

Written Sunday 5/14 around 9 p.m.

 I apologize first off for being away so long.  Life has been pretty normal the last years since I stopped treatment for stage 4 Colon Cancer.  

I don't really know how to begin this post so I guess I'll dive into the details as I have them.  I had a Physical on April 15 with labs.  Those showed a high Liver Enzyme.  My Primary doc ordered an Urgent CT to see what was causing the Enzyme.  The CT came back with a very good report which made all of happy as I haven't had a scan in many years.  On May 3 I was experiencing new symptoms Like itchy skin and other things associate with Liver issues.  I saw my primary Doc again and after a short discussion he suggested it was likely a blocked bile duct.  He referred me to GastroEnterology.  I got a call regarding scheduling and the soonest appointment they had was Thrusday May 11.  I met with an NP and and ER Doc who was trasitioning out of the ER.  After a thourough review of my case they felt it best to order more labs and an MRI of the Liver.  So Friday I went and got my labs done over lunch.  Yesterday I started my day driving to Reed City Hospital for an 8 am MRI.  After completing the MRI, I got in the car where I had packed my Meds and Coffee.  I took my meds right away and sipped my coffee on the 1 hour and 15 minute drive back home.  

My girls were at a baby shower Saturday so I had the house to myself so to speak.  I finished one show I had been watching and was starting another when I got a notification in my MyChart app that I got a test result.  I looked and it was the MRI Report.  So just 2 hours aftert the test I read the full report.  Not once but several times.  The result was not what I wanted to read.  Pushing on my bile duct and Portal vein (which both sit under the liver) was a rather large mass.

We were on our way to meet family for dinner to celebrate my long delayed Birtday.  The GI doctor called Leah since he got the busy signal on my phone.  We talked with him about what the report said and next steps for the entirety of my 30 minute drive.  Consensus was for us to go to the ER and be admitted to the Hospital to get 2 things.  First a Biopsy of the Mass and Second a Stent in the Bile duct.  

This morning I took a picture of Leah and Lydia on the Front porch as Today is Mother's Day.  Then Lydia drove me and Leah to the ER for the beginning of this new Journey.  During our stay in the ER there were a lot of conversations Mixed with a lot of waiting.  Finally at 4 they had a room.  At the moment I was excited until we got off the elevator and rounded the corner headed to the wing I would be in and the words on the door read  "ONCOLOGY".  I have been here before and hoped I would never be back.  This was a familiar but undesired hallway.  I was wheeled around the entire wing to get to my room.

When we arrrived in the room My nurse was found relatively quickly and asked 101 questions (her words not mine).  I aksed about food since I was given the rights to eat just a little before leaving the ER.  I got a menu and had what I thought to be a delicous meal picked out.  I callled the number and gave them room info and verified it was me then told them what I wanted only to be told I could not eat that since I was on a low fat diet.  I wonder how that got in my chart?  New selection was made and I got dinner about an hour later.  I have 2.5 hours left to eat before they cut off my food supply.  Why you ask?

They are cutting off food supply at midnight due to a possible procedure tomorrow.  This procedure would likely be done by GI which is an endoscopy with Ultrasound and Biopsy of the mass while they are in the area.  I'm hoping it's tomorrow but at this point you learn in the Hopsital things move at the Hospital's pace....

All this to say when I get the biopsy done they will be able to tell what this mass is and what we need to do to treat it.  So for Now from the Oncology wing of the Hospital, Good Night.  More information will be posted here in the not to distant future.

Kent