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.