One week, Good week

As I have said before the goal to my final stages is to string together good day after good day.  This past week has been a good week.  With the time frame that has been somewhat imposed on us, we put our noses to the grindstone and did some things that needed doing.  Funeral planning was something we talked about but we always seemed to find a way to put it off.  Last week we said no more excuses and went ahead and did it.  I am so glad we did because there is so much more to a funeral than you would think.  The idea of Vic and the boys having to do this during the grieving process leads me to believe that something would have been missed.  Now I know everything is covered and all Vic has to do is pick up the phone and start the process when it is time.  Just a side note, if you want you can actually pre-plan your funeral at any time.  This may be helpful for the future.  You don't have to sign up for anything but,  it can give you a good idea on what the funeral home is capable of along with the pricing.  Our funeral director was a younger woman who really enjoyed the idea of being able to talk to the client.  That usually doesn't happen and she mentioned it was nice.
I also met my hospice nurse this week and I really like her.  More importantly, Vic likes her a lot and they seem to both get along well.  The nurse made it very clear that her and Vic will be teammates throughout the process and Vic really understands her role and how important it is.  I was also told what Vic has been trying to tell me for years, she is the boss.  I have to listen to her and heed her advice in order for this hospice thing to work.  It does seem to be working so I'll go with the flow.
The big question this week is what is going to happen to me physically.  The nurse explained that pain is the sign to look for.  Without any treatment my tumors have free reign to grow and their growth will cause pain.  I have experienced an increase in pain starting on Thursday.  Pain management is the only way to feel better and as time goes on the pain will be something that is not manageable and I will have to fight through whatever I can.  Along with the pain, my other organs like heart, lungs, kidneys and liver will be compromised and more than likely fail causing my death.
Nobody knows the timeframe and the only clue will be how I feel each day.  That is my mantra...Everyday is going to be a good day!  So far the Lord has once again blessed me by allowing me to spend time with my family and friends.  This has been a great closure time for so many people and I know it will continue until God is ready to take me.  Keep praying, everyday is a good day!

"While I still can......"

"You better do it while you still can....".  This is a comment that I've been hearing a lot lately and it's very true.  Ever since my release from the hospital I have had the opportunity to spend time looking at this cancer battle from the mental side.  We made the decision to let the physical do what the physical will do.  No more treatment, just try to stay comfortable.  I was not aware of how difficult the mental side of this would be to deal with.  I was not aware that the mainstay of my "treatment" was going to be pain management.  I've always prided myself on having a sharp mind and the narcotics have definitely dulled a good portion.  It is actually funny to listen to Vic and Sam tell me some of the things I did that I had no idea I did.  We all laugh, but I can see how it hurts them knowing this will be the new norm.  There are times in the middle of the night when I get frustrated because my mind is not working right.  I tried to explain to both Sam and Vic one morning that I fell asleep to a show on TV that was filmed in Alaska and when I woke up I thought it was winter outside.  No big deal but, it happened more than once.  That is when it gets a little spooky for me. I am writing about things like this because these are the things that make me feel blessed.  I have the support and understanding of Vic and Sam everyday.  They can be my filter but at the same time they allow me to just talk and discuss what's going on.  I read about people who are going through this phase and see that the drugs are the only support they have.  They use them for  both mind and body numbing.  Not me.  I still feel God has some things for me to say.  Stay tuned for those gems (get ready filters). Just kidding.?
Something else that has happened over the past few days has been a huge increase in communication between Vic and I.  She has been lucky enough to take some vacation days from work so she has been here full time.  We have used this time to just sit and talk.  What do we talk about?  Everything.  We have set up where the funeral is going to be and what will be done at the service.  We've gone over my hospice care and how that all works.  We have got tons accomplished which will be very helpful in the long run.  Most importantly, we have had the time to talk about our lives together.  We have laughed and mostly cried as we talk about the immediate future.  We have kind of reviewed our lives together and I am very happy with what we did.  Our boys have given us all a parent could ask for.  We have lived our lives in a way we can be proud of.  We had many chances to go to what I call the "Dark Side" and cave into a materialistic life style but we didn't.  I'm very proud of this. Our focus has been and remains on the happiness of the entire family and the payoff shows we made the right decision.  After we did a kind of an inventory on how we think we did, we were both comfortable enough to make a decision.  We decided every night that in addition to saying I love you when we go to bed, we are comfortable enough to say "good bye" and feel peace and solice.  You don't need a pending death to do this.  Go ahead, take your own inventory and see how you feel.  Keep praying.

The decision of a lifetime.

The first thing I have to do is thank my son Sam for jumping in and keeping you updated on my progress.  It was much more difficult to do than anyone could imagine. I will continue from here.

I went to the hospital on Monday for my usual.  Blood work, meet with the nurse and the Oncologist and if all looks good we will have some sort of treatment.  The treatment that I was on the prior 2 weeks was very difficult on me and caused a lot of pain and other bad side effects.  Vic and I had decided that if this treatment does not show any positive benefits we were going to ask the doctor for a new plan. We needed something that both of us could tolerate physically and emotionally.  We were looking for the only thing left, The Wonderdrug.  We were looking for the impossible but, we knew we were running out of options. What drugs would give me the power to slow the growth of my cancer in order to allow me to enjoy my extra days with Vic?  When the results from all the tests came back, these questions that we had kind of been joking around about suddenly became our reality.  I was being checked in to the Cancer wing ASAP.  It was finally clear just how sick I really was.  The decision I had to make was no longer regarding the type of drugs I want to be on.  I had to decide how I want to spend my final days.  What type of Hospice, permanent or visits.  The time had finally arrived and the question that Vic needed answered for so long could be asked.  The best guess based on the numbers is that I have 4-6 weeks to live.
I was discharged from the hospital on Wednesday and Thursday starts the beginning of the end.  My goal is to have a good day everyday. I will now pray that that happens.  I'll do my best to keep up on this blog. If I can't,  I always have Sam. Thanks for the support and prayers.

Update

Hi everybody,

Here is a quick synopsis of the ongoing battle. The combination of the cancer, treatment, and pain medications has made it difficult for dad to post on his blog at this time and I wanted to write this short update on his behalf. Following the last round of chemotherapy, my family wanted to make sure that regardless of the treatment plan, the comfort of my dad is the main priority. After consulting with the doctors and nursing staff during today's visit, we are looking to determine the best course of action for managing his pain and assuring his happiness. We will be sure to keep you posted. 

"Therefore I say to you whatever things you ask when you pray, believe that you receive them, and you will have them."

                                    - Mark 11:24

Keep praying!

Sam Katula

Good news.....Bad news.....Crystal Ball news

I'm going to start with some of the bad news first.  Of all the news I got this week, the realization that Lillian, Caroline and Owen are leaving tomorrow hurts me the most.  Not only do I feel bad emotionally, I also feel bad physically.  Today when I hugged and kissed those kids and told them good-bye I knew this could be the last time.  For the first time I actually had a very strong feeling that I must tell them how much I loved them.  The best part was that the kids took care of most of it for me.  They kept giving me hugs and kisses and telling me that I'm the best Papa Charlie ever.  Lillian said she will see me again in Baltimore this summer.  Caroline wanted to make plans to ride scooters in the park.  As I said before, my feelings of finality were becoming stronger but, the kids did chip away at that dark spot on my heart.  What started as a 100% bad news situation turned into a positive chance of seeing them again.  Hearing them tell you how they will pray extra for not only you but, for other people who need Gods help, also warms my heart to know they understand the power of prayer.
Now, the medical news.  I met with the doctor on Monday and here's how the day went.  Vic and I were joined by Sam (surprise) at the Chemo Suites at 12:15. My blood draw was scheduled for 12:30 and everything was running ahead of schedule so I got in at 12:20. Everything was going normal until they couldn't get any blood out of my port.  Three different nurses tried but no luck.  My port needed to be cleaned out.  In the meantime the doctor needed my blood so he could formulate a plan.  Back to old school...we will get it directly from the vein. So, with one nurse injecting my port with a cleaning solution and the other nurse poking a vein we were able to do it.
The routine continues.  My nurse sends Vic and Sam to the exam room and we continue on to the scale.  Just before I got on the scale,  the nurse rubbed my back and told me I was not looking very good based on my weight loss. I agreed since I had lost over 20 lbs since my spleen surgery. Now my vitals are taken and the standard questions are asked.  Fatigue level, appetite, pain level etc.  Now everything is recorded and we wait for the doctor.
Readers digest version of the discussion we had with the doctor is to follow:
The new treatment did not do anything good.  I went through, no, we went through the toughest 2 weeks and got zero results.  My tumor marker actually went up by around 300 points.  This was a waste.  Our new plan is very simple.  My Palliative nurses team is taking the lead.  My pain has to be under control at all times.  Anything to make me more comfortable is a phone call away.  Our next chemo plan will consist of 2 strong drugs but given at a lower dose.
The Crystal Ball portion is just that, we will be watching for any changes good or bad and try whatever to make me feel better.
My new plan starts on Monday, but it wouldn't be Chuck's treatment if I didn't have a small hurdle to start.  I have a bladder infection and I am on antibiotics.  I need this checked on Thursday.
Allison and the kids are on their way home, my new treatment is shot in the dark and I have to get used to taking pain meds on a regular basis whether I feel the need or not.  My tumors will always hurt, it's just that my body has gotten used to the pain and treats it as normal.  PAIN is not normal!
That's it for now, but there will be many more entries.  Throughout this battle I have had one constant that's kept me alive and out of the loony bin.  My faith in God and the overwhelming love I am constantly washed in by my family and friends.  God sees this love and allows us to feed off of it and apply it to different facets of our lives.  Take advantage of this powerful tool, there is enough to go around.  Keep Praying and I love you all.

  

Since we last talked.....

As I explained in my last post, I received a new treatment regimen last Monday.  My initial plan was to give it a couple days and then report on how I was doing.  Well,  the first few days after treatment I felt like I was run over by a bus.  I think every muscle in my body hurt.  My digestive system was in disarray.  I was so fatigued that I didn't get out of bed unless it was an emergency.  I knew they told me this treatment would be tough.  I was not prepared for how tough. The only thing I could do is ride it out and hope it gets better.  That was a good plan until I ended up in the emergency department.  On Thursday night my temp spiked and my, what I call "Tumor Pain", got to the point where I could not bear it.  They gave me fluids and anti nausea meds and ran a bunch of tests. I was deemed ok and they sent me home at 1am.  When I woke up Friday I did feel better but not good.  We contacted my doctor and after reviewing the test results from the ER, we decided to give it a little more time.  Here I am on Monday and I finally feel good enough to make this entry.  I still have a good amount of lower back pain that is caused by both tumor growth and tension.  I have been able to keep that pain at a manageable level with the use of Oxy.  Just a bit of perspective as to what I've been going through.  Matt, Allison and the kids came into town for Owen's baptism last Sunday.  Matt had to get back home for work and Allison and the kids have been here since. Here's your perspective,  I've felt so bad that  I have not been able to have the grand children stay with us at our house.  I didn't think there was anything that could stop that.  Well, I was wrong.  The good news is that I think I am getting a little better everyday and they will be here with Papa Charlie for a sleep over very soon.  I will also uphold my promise to take them to the Zoo some time this week.
The battle is getting tougher.  The cumulative effect of all the drugs along with the tumor increase has really taken it's toll on my body.  There are so many "Catch 22's" when treating cancer.  The medicine that gets rid of the tumors makes you feel sick.  You have to eat in order to keep your strength up but, you never feel real hungry.  It's important to keep your exercise level up but, you are so tired you can't even think about walking.  I am a walking, talking example of "Day to Day".  I can't plan to do anything because there is no guarantee that I will be physically capable to do it.  My Mantra is now, "If I feel good now, do it now."
As I go back and read this entry I want everyone to know that I am not trying to be negative, it's just that the things going on with my disease are negative.  I have many positive things going on too.  My grandchildren are in town.  Last night Allison, the girls and Owen spent most of the day into the evening with me.  Sam and Ali made a delicious dinner for us and we all had a great time.  The Zoo is coming up.  I hope to have a bon fire complete with smores one night this week.  Whatever I can do, I will do.  Every memory I can create is important and God willing I will be filling my memory bucket this week.  Thanks for all the support, Keep praying and keep the comments and questions coming.

Another treatment plan is in my future

I had an appointment this past Thursday for the usual blood work and chemo, or so I thought.  I knew going into this appointment that my finger infections were starting to get worse.  Both Vic and I figured we would have to switch my chemo infusion to another drug, no problem, that was in the plan if my fingers started to get bad.  So, when we were sat down and told that based on the numbers and the finger infection we would have to change up my treatment plan completely, we were a little surprised. Actually, we were a lot surprised.  Things had seemed to going pretty well and to plan.  We knew the Erbitux chemo was a bridge treatment and based on how my fingers felt and looked I knew last week was going to be my last Erbitux treatment.  Why then would everything have to be changed?  Then came the numbers news.  My tumor marker went up nearly 200 points.  My current cancer fighting plan was no longer working.  If you recall, the main reason for me not being able to receive certain chemo drugs was because they were platelet driven and my platelets were always too low.  We did solve this by having my spleen removed so the options available are much better now than before.  Based on that information the Oncologist selected two new chemo drugs.  These drugs are new to my system but are some of the first chemo drugs used.  One was approved in 1957 and the other in 1996.  Oldies but goodies I guess.  The infusions are going to be every two weeks starting this Monday.  One of the drugs requires I wear a pump for two days after the Monday infusion.  So, I get infused on Mondays and I get the pump removed on Wednesdays.  These particular drugs in combination are supposed to be very potent.  As the doctor said "you know you are on chemo" because the fatigue, nausea and aches are at a pretty high level after the infusions.  He also said these side effects should get better as we move away from the treatment date.  Oh yeah, chances are I will be losing my hair this time.  Based on the other side effects I have dealt with so far, the hair thing is all good.  One more thing I was told during our meeting was that I have a urinary tract infection.  I guess the pain generated from the tumors growing was masking the pain from the UTI so I really didn't notice it.  Well, I'm on antibiotics for that and it should clear up in a week.
This is a lot of info to write about without going on forever.  Please feel free to ask questions or make comments.  I know everyone wants to ask a question or make a comment that is positive and not say anything that could have a negative spin to it.  Face the facts everyone, at this stage of my battle the negatives are far out weighing the positive, that is just the way it is.  ASK whatever you want and allow me to give you an insight that only I can give.  There is a lot of new stuff on the horizon so KEEP PRAYING.