Latest surgery update

I had my "procedure" yesterday as planned.  The surgery entailed placing a stent in the tube between my right kidney and my bladder.  It was verified that a tumor has formed on the outside of my colon and it is pressing on the tube causing it to partially collapse.  This collapse in turn had caused my kidney to swell and without treatment it would have shut down.  The stent that was used was a newer type of stent.  It is made of metal as opposed to the standard plastic tube that is usually used.  The anesthesiologist and all the OR nurses told me they had never seen this type of stent used and they were excited to see it.  On a side note; I was almost done getting prepped for the surgery.  The only thing left to do was put me to sleep when a nurse came in and said to slow down because "Charlie the Stent Man" has not shown up yet with the stent.  They said they were trying to get in touch with him but he was not answering his phone.  Well, let the small talk begin.  We talked about family, weather and eventually the lead nurse asked about my cancer.  I told them the whole story and asked them to use my story to convince friends and loved ones to get checked on a regular basis.  As we chatted it up in the operating room, Charlie delivered the stent and it was now sleepy time for me.  The surgery went as planned.  The surgeon had a little difficulty placing this type of stent but, all in all he said it went well.  There was some bad news.  During the operation the surgeon found a small tumor inside my bladder.  This was removed and it was sent out to see if it is part of my current cancer or if it something new  We will find out those details at a later date.  The recuperation process for me is going well.  The pain is manageable and is nowhere near the level after my spleenectomy.  Thank God!  Now I've just got to rest and heal up so I can get my chemo treatment on Thursday.  Thanks for the prayers and keep praying.

Family

I had a great day yesterday thanks to the love and concern of my family.  Vic's brother Bob and his wife Donna have been trying to get me out and about for a couple of weeks now. Unfortunately I had just been too sick to do anything.  Well, yesterday we finally got together and my family and me (that includes Ali),  Vic's Mom and Dad and the Duesings (Bob, Donna and their kids, Kyle, Katie and Lauren) all went for a long walk.  The walk was nice but it was the company that made the walk therapeutic for me.  The Duesing family has always been there for me throughout this ordeal.  I just want to give a big shout out to all of them and tell them how much they mean to me.  Their love of God shows in everything they do and the spiritual support I get from them is outstanding.  I know if I ever need anything, any member of their family will help me out.  I have been truly blessed with having them as part of my family.  Thank you guys!

Just the facts

The PET scan has been read.  The consult with the urologist is complete.  In this blog entry I decided to list the facts that were learned.  I don't want to include any feelings or thoughts regarding the results, just the facts.  I'm doing this because I've had many people ask about the cancer itself and what is it doing. This is the information I as given.
On Wednesday I met with my oncologist to review the PET scan results.  I have not had a chemo treatment for almost 4 weeks so we all knew the tumors were growing.  Unfortunately, we did not think they had grown this much.  According to the radiologist report, my scan shows a significant spread of the cancer.  The tumor activity has increased in the areas we knew had tumors.  My liver, lungs and left side adrenal gland all showed an increase.  The new areas that are now involved include my abdominal wall, a lymph node in my chest and what is listed as a reoccurrence of the colon cancer on the outside of the colon near the original surgical sight.  This tumor is also causing the collapse of the tube between my kidney and bladder causing my right kidney to become compromised.  This brings us to the next procedure.  I met with the urologist on Thursday and he confirmed that a tumor is the cause of my kidney problems.  I will have surgery on Monday to correct that problem.  We have also decided that we cannot wait any longer on treatment.  I had a chemo infusion yesterday and hopefully this will start to shrink some of the tumor spread.  I have a lot going on right now and this seems to be the only plan right now that makes sense.  I will update everything as the smoke clears and we start getting some results.  Thanks for all of the support and prayers.

An answer to a prayer?

As I had mentioned, I was scheduled to get a PET yesterday.  The PET scan is done in order to see the tumor activity in my torso area.  The scan itself is a relatively simple procedure.  After fasting, starting the night before, I am injected with a radioactive solution.  After this injection I must lie still for 1 hour in order to allow the solution to get to the tumors.  After an hour, I am taken to the scanning tube, which takes about 30 min and the procedure is complete.  Normally this is a painless procedure.  Unfortunately this time was going to be different.  The back pain that I have been experiencing was so bad that I didn't know if I would  be able to complete the procedure because I couldn't lie down.  I eventually had to take pain meds and we completed the scan.
This back pain is becoming a major problem.  I have not been able to sleep at night, my appetite is low and I can't do anything.  I have been taking pain meds, stretching, hot pads and ice packs and no relief. My frustration level is very high.  So, what do you do when you feel there is no hope?  You pray!  I have been praying for relief of my back pain everyday.  Guess what?  God answers prayers.
When Vic and I got home from the hospital her phone rang.  Vic answered and it was a urologist office trying to set an appointment for me.  She did not have a clue as to why and then the home phone rang and it was the hospital.  I answered and the nurse explained to me what was going on.  The radiologist was reading my PET scan and was writing the report for my oncologist.  While looking at the scan the radiologist noticed something that was not right.  He saw that my right kidney was shutting down.  This was being caused by a blockage of a tube that goes from the kidney to the bladder.  He immediately called my doctor, who then immediately called a urologist and set an appointment for me.  There are a variety of reasons for this blockage but they all seem to be fixable. I asked the nurse if this could cause back pain and she said absolutely.  I had not mentioned my back pain to anyone during the PET scan.  The radiologist was not looking for this problem while reading the scan.  God intervened and answered my prayers. I have an appointment scheduled for tomorrow and I will update as the information comes in.  Keep praying........it works!!!

Future treatments????

I'm sure you know by now that my spleen surgery has caused me more hardship than expected.  The recovery has been very difficult.  The 15 months of chemo has caused my recuperative ability to be compromised more than we all thought.  Over the past three weeks I fell into a cycle of taking meds for pain which caused digestive problems which caused lower back pain which caused me to take more pain meds.  This cycle has been debilitating.  I was doing nothing other than trying to control pain.  This cycle has caused me to think long and hard regarding future treatment.  After many conversations with family I had decided that my remaining time will not be spent chasing relief from my treatments.  I want to spend my final stages of life enjoying life.  If the side effects of my treatment are debilitating, I will not continue treatment.  This decision was passed along to my nurse, who passed it to my oncologist.  The doctor immediately set up an appointment to discuss my decision. That appointment took place yesterday and this is what we decided to do.
My appointment started as usual.  They took 3 vials of blood and sent it out to the lab.  I am still fighting the lower back pain and one of the things that causes it to be worse is stress.  Needless to say I was stressed.  I was about to tell my doctor that I decided to stop treatment.  My pain was getting worse as I waited.  By the time I got into the exam room, I was not able to sit or stand.  I had to ask for a dose of pain medication if I was going to continue.  The nurse complied and I started feeling some relief.  I thought to myself, "this is what I'm talking about.  I don't want to be a slave to pain and pain meds that are a result of treatment."  When the doctor came in he immediately asked for me to explain what's going on in my head.  He assured both Vic and I that he cannot and will not force any type of treatment on us.  He was willing to do whatever we decided.  He did not agree with the decision to quit treatment and he actually seemed angry.  He reminded us that the main reason for the limited options of treatments was based on my low platelets.  The spleen surgery solved that problem and has opened up our options.  He has a plan that would take advantage of my high platelet count with minimal side effects.  I told him I was willing to try as long as the treatment was not debilitating.  The first thing we are going to do is have another PET scan so we can see what kind of tumor growth has occurred since I have been off treatment.  This will happen early next week.  It's really very simple.  If I can tolerate the treatment I'll continue, if the treatment effects are debilitating I will stop.  It all comes down to quality of life for me and my family.  My focus has to be on creating meaningful  happy memories with my friends and family.  My cancer is terminal.  There will be a time when the disease takes over my life.  I just don't want it to take over earlier then it has to.  Keep praying.  

Thanks for the help

I just want to give my thanks to a few people who took a little extra effort to make my life more comfortable this past week.  A few months ago Vic had made arrangements to go to Baltimore and babysit the grand kids while Matt and Allison went to an out of state wedding.  I was not sure if I would be able to go and as it turns out the surgery made it impossible for me to do so.  So, last week I was on my own.  Granted Sammy was still with me but his schedule with work, night class and part time job kept him pretty busy.  This is where I got some help.  Allison's Aunt Sue and Uncle Mark dropped off a couple of meals.  Our good friend Ellen Fuller did the same.  Also my brother Bob came down from Minnesota and spent the weekend here so I had some company.  I really appreciate the effort from all of them.  It really made a difference.  Thanks again!

Post Op update

I've just completed another week of recuperation.  Overall I feel things are getting better but, I still have some challenges to deal with.  The surgery seems to be healing now.  My incision areas are feeling good.  I do get a little tinge of pain every now and then but nothing major.  The main problem I have been facing this past week has been digestive problems.  The use of all the pain meds has really caused my insides to shut down.  This has caused me to suffer from nausea, constipation and lower back pain.  I have been taking other meds to offset the problem and it has taken about a week to start working.  As I type today I can say I feel the best I have since the surgery.  Hopefully the worst is behind and I can get back to being able to function normally.  The weather has also been a real bummer.  I know if I was able to get some exercise I would feel better but, cold weather, rain and snow has been the daily special.  Unfortunately, the prospect of better weather does not look good for another week, I'll have to keep walking around the house.  I'm looking forward to next week because I should definitely feel better.  I will update as things change.  Keep Praying!
 

What do I do now?

These past couple weeks have been the most difficult, both mentally and physically, I've had to deal with so far.  As time marches on during this battle the chance of figuring out the question,"What now?" is getting harder to answer.  When I had my original surgery I knew the plan was to remove the colon tumor and start treating the liver cancer with Chemotherapy.  I was able to track my progress as I watched my tumor marker go down.  The side effects from the drugs were as advertised and I was tolerating them very well.  When the first chemo drug stopped working, we quickly starting using a different drug.  It all seemed very seamless.  The results of the new drug were great.  My tumor marker continued to plummet. I was reminded at every session how far I've come and what great job I am doing.  I felt I was going in the right direction, so when I started to get finger infections from the chemo, I accepted it as a minor set back.  We will change drugs, have some minor surgery to fix my fingers and restart the program.  During the wait time for the surgery to heal I was reminded that the cancer was still there.  My blood work showed the tumors were growing and I needed to get back on treatment ASAP.  Once I was able to get back on the juice, I hoped everything would fall back into place.  Good reports from blood work, tumor marker declining and just a better physical feeling was in the future. Right?   Not right.  The new medication was causing my blood pressure to rise to dangerous levels.  The drugs I was given to help that problem made me sick.  The chemo drug itself did not perform well against the cancer.  I had to get off this drug and find something that will work.  This is where the reality of the situation is starting to come into focus.  In order for me to be able to take any of the remaining chemo drugs, my platelet count had to be higher. The only option left to increase my platelets was to have my spleen removed.  My initial thought was well let's go.  My colon surgery recuperation was not that bad.  What I failed to remember was that my body has just been through 15 months of chemo and it is pretty beat up.  I also had the unfortunate situation where my spleen was very large and this caused the surgeon to have to use an additional incision in order to get it out of my body.  Needless to say, this surgery was very,very rough.  My recuperation has been a nightmare. This is where I begin to question what I am doing.  I am having to deal with pain, insomnia, constipation, nausea and just that overall terrible feeling 24/7.  Now remember, I'm not the only one who has to deal with this.  Vic has had to put up with this also.  The question "What do I do now?" covers both of us.  The hospital called Vic the day after my release to let us know they had decided to cancel my chemo treatment visit due to the surgical recovery.  I agreed immediately and starting to focus on feeling better.  I kept telling Vic that I need to get back on chemo.  I could tell my tumors were growing again.  Vic told me not to worry so much about treatment.  She knew I needed to put all my energy towards getting better from the surgery.  Boy was she right.  I just felt worse every day.  When we showed up at the hospital for my chemo appointment this week, the nurses seemed to pay special attention to me.  After my original blood work and exam it was time for the truth.  No treatment again.  Instead, the nurses started taking more blood and the NP ordered a full bacterial panel.  She also told us that she did not like the way my lungs sounded and and ordered a chest X-ray.  She was also concerned with the amount of pain I had associated with the surgery and I had told her I was running a fever on and off all week.  The surgeon on duty was asked to see me and examine my incisions.  Vic was right, they are not concerned with my cancer, they were just concerned with me and my physical well being at the time.  This was the first time I felt like the cancer was a secondary concern.  I don't know why the Lord caused one of the older nurses to look into Vic's eyes, but when she did, Vic started to cry.  The nurse left the room and everything continued on.  One more blood draw and we would be on our way home.  So far all the tests are coming back OK.  The nurse was about to take the last vial of blood when she said my medical port is clogged.  She tried again.  Another nurse tried and yet another.  Nobody could get it to work.  The only thing to do was to call to the pharmacy and get some solution to unclog the port.  This will take about 30 minutes.  We waited there all day so far so what's another 1/2 hr going to do.  A half hour went by and the nurse was ready to take another shot at it.  Nothing! Still clogged.  She asked if we could  please try one more time. I agreed and she put another injection of cleaner into my port.  Time to wait again.  Then a knock on the door.  I'll tell you truthfully I said to myself "Now What".  It was Amy, one of the  cancer counselors at the hospital.  Their organization is called Stillwaters and it is a no charge service for cancer patients and their families.  We had never talked with anyone from Stillwaters before and we wondered why she stopped today.  She said she was called by a nurse and was told to hurry over because she has someone who is having a tough day.  I'm not going to get into what we discussed because it was a little about a lot. Let's just say that the Lord knows when you need him most.  It was an excellent outlet emotionally for Vic and I.  We have come to the conclusion that we need to ask more questions and start taking more control of my treatment.  I have to start doing what's best for my family and my quality of life.  I need to do things based on memories that will be created as opposed to when my next treatment is scheduled.  My faith is still strong and God's plan is the only plan.  I just think the plan is changing a little.  We need your prayers now more than ever.
Keep praying!