The End is Truly the Beginning

The title of this last post says it all as Dad has ended his journey on Earth and has begun the life we all dream of in Heaven. Dad took his final breaths surrounded with love from family, friends, and followers of this blog.

Dad went peacefully. After he was given a bath by both Mom and Auntie Lori, he honestly had a smile on his face! For somebody who desired to make others lives better, I would not expect anything less.

Lastly, I need to thank everybody for following his blog. I have no doubt in my mind that your support kept him strong, thus allowing him to bless us with his presence for 2 years. I cannot put into words what this blog has done for him and I know he hoped that it would inspire others as well.

You have all prayed for Dad during this time and I know that he will be watching over every one of you from Heaven.   

--- Sammy

Sorry for the Delay

Hi everybody,

Thank you for being patient. The family has gotten many phone calls and Facebook messages asking how our situation has progressed; we really appreciate the continued love and support! From now on, it is no longer possible for Chuck (Dad) to write his blog posts without aide. Therefore, I (Sam) will be finishing off his final posts. In the past couple weeks, we have gone through many changes. The most significant being a morphine pump connected through my Dad's chest port that will continually release a dose of pain medication. Every week, our hospice nurse has increased that dose in order to make Dad more comfortable. With that comes some challenges for Dad. As you can guess while reading his posts or knowing him personally, his pain tolerance is extremely high (a trait apparently I did not seem worthy to receive!) What makes this next step so challenging has nothing to do with pain, because it is managed, but rather his mental state. My Dad has always been a source of great knowledge for my family yet with the combination of cancer and medicine, his brain function is slowly deteriorating. Subjects that would be routine for him are now becoming more confusing. He knows what he wants to say but it does not come out the way he wants it to. This, for him, is heartbreaking. However, it is important for him to continue increasing his dose of morphine so his pain is controlled. I would rather have his mental state weakened than feel the potential excruciating pain of cancer.
Our family has been coming over more frequently as we do not know when "the day" will come. Luckily, we have always had a pretty tight knit family but for those of you who have not spoken to a family member in a while, be it a couple days, month, or year, find time. Without our family support, this situation would seem nearly impossible. I love my family because Dad taught us to. He knows we will be OK without him because we have each other. Talk about an amazing situation to leave us in! Thanks Dad!
- I love quotes, especially from children's movies because they are so powerful, yet when you see them when you were younger you never realize their actual magnitude. So I like to finish off posts with my inner child-

"Ohana means family, family means nobody gets left behind. Or forgotten" - Lilo from Lilo and Stitch

Not late, just following directions

 Sometimes it is important to follow directions in order to keep someone happy.  In this case it is my oldest son.  When I say oldest I really mean it.  Oldest!  I usually post a birthday greeting on the day of the actual birthday but Matt wanted to keep this birthday on the QT.  His new work associates can find out later.  Well here it is,  HAPPY 31ST BIRTHDAY YESTERDAY!  I hope all went well and the traditional birthday week will continue to be enjoyable.  I love you.  Dad

What's going on?

Quick update as I start my 7th week on hospice.  My nurses have all given me good scores regarding my vital signs so my heart and lungs are keeping pace.  Unfortunately, my liver and kidneys along with the pain are not doing as well.  I can definitely tell my system is getting worse due to the fact I am always tired.  According to the nurses, the combination of increased fatigue and pain will continue until the end, not good. I had another good week from the standpoint of being able to get around.  My major trip of the week was being able to fulfill a promise I made to my oldest grand daughter.  I promised her that I would get her ears pierced for her 5th birthday and that I would be there for the piercing.  So, on Wednesday, I loaded up my transport chair and we headed for the mall.  Allison, Caroline, Owen and Vic were in the audience also.  We picked out some beautiful butterfly earrings and the process began.  I have to give Lillian a ton of credit because after the first one you know all the, "Don't worry, it won't hurt", is all a bunch of #%$^&*#. (fill in the blanks) That second one was going to hurt as much as the first and she still did it anyway. Happy Birthday Lil's, Papa Charlie loves you. Major Mission accomplished and not a moment too soon.  It was decided that Al and the kids had to get back home to Baltimore.  I'm sad to say they are now back home but I understand they had to get back to their lives.  Lillian needed to get organized for school, Caroline needed to get organized for her activities and Owen needed to get organized for more growing and living life in general.  I was blessed being able to have them with me for almost one month.  I was actually allowed to see them grow up, it was great.  It was funny when the kids and Al came over while we were getting a visit from my hospice nurse.  As we were sitting in the living room discussing my case, the door flew open and the excitement began.  Caroline was a bit crabby and was crying.  Lillian ran person to person to say hello with hugs and kisses.  Ramzi starting barking loud and long.  I now had to introduce Allison to the nurse with a little higher volume than we were using before.  The first thing the nurse asked me was, "Does all this bother you?" I laughed and said, "Absolutely not." I told her this was music to my ears and wouldn't have it any other way.  If this is not happening to you, get your family more excited to be together!
The hardest thing I had to do was say good bye to the kids and Allison.  Did I want them here when I pass?  I don't really know.  The more I think about it, the more I'm glad they will not be here.  I want their last memories to be happy ones and we have accomplished that for sure.  God has allowed me to see my grandchildren grow.  He also allowed the kids to bond with Sam and Ali, which was very apparent with how tight they are now.
Every day after the 4-6 weeks I was given by the doctor is supposed to be borrowed time.  Borrowed from who?  The only person who can give you more time on this earth is God.  I've come to the conclusion that if I am going to borrow anything from anybody, it will be time from God.  If He wants to give, I will be more than happy to receive but, when the time comes and the time runs out I'm ready.  Keep Praying!

The day after the Fair

I've starting writing this entry about 3 times now.  I've had to start over because I keep falling asleep.  I guess that is the sign that I had a wonderful day at the State Fair yesterday.  To tell the truth, wonderful is an understatement.  It was everything I dreamed it would be.  Lillian and Caroline were wide eyed and full of energy from the time we got there until the time we left.  The rest of the gang included Allison, Vic and Sam.  We missed Owen who was at home with a sitter and Ali who had to work.  Our plan was to see a few animals, grab some dinner and be out in a couple hours.  I thought this would be a good plan for me and the girls based on my energy level and their attention spans for looking at cows rear ends and unlimited fried anything.  Boy was I wrong! Once we got there, we were all energized.  Thanks Sammy for pushing me around in my transport chair, I could not have done the fair without it.  The girls walked through the cattle barn and loved seeing the cows up close.  They especially loved the fact that the cows had to take baths. Then we went looking for the horses.  The horses are my favorite animal at the fair and I hoped they were available to see.  I knew the girls would love to see the huge draft horses.  We walked for quite awhile until we found the horses and it was worth the walk because we got to see them up close.  The exhibitioner had pulled the horses out of their stalls to get them ready for the 6pm wagon pulling show.  They are huge.  We got to see them get washed and the girls loved that the horses had their hair braided.  What's next, who's hungry, what do you want to eat?  We were ready to go.  We decided to get something to eat and then we were going to see Katie Duesing who was working the trampoline ride.  We eventually found it and Lillian got harnessed up.  She jumped around a little and then found her stride.  With Katie's help Lillian starting going high enough to try a flip, and man did she flip.  She flipped forward and she flipped backwards.  She flipped more than I thought she ever could.  I think we have an athlete on our hands.  We started to leave and go onto our next adventure when Papa Charlie saw the pony rides.  I have to see my grand children on the pony rides before I go.  Both girls said yes so we paid, got them on the ponies and we were ready to go.  Or so we thought.  Caroline decided she didn't want to go without Nana.  So, in order to alleviate an eruption, Nana stepped up and walked next to the pony.  All it took was one time around and Caroline was fine but, Nana stayed walking with her the whole ride anyway.  Nana did find out the reason the workers wear boots instead of flip-flops and we also learned it all cleans off.  Time for more fun, "Let's go on the slide Sammy.  You have to go on it too Nana".  Their wish was my command.  Where is the slide?  After more walking we found it, got our burlap, climbed the stairs and Sam, Nana, Lils and Caroline flew like birds and went down the big yellow monster.  "Can we do it again, can we do it again?"was all I heard.  Just like any good Papa I answered with a loud, "let's get something to eat and come back later, ok?"  We all agreed and started the trek once again for food.  Burgers from the cattleman's grill, roasted corn, Millies Italian sausage or dessert.  What do we get?  We got them all!  After a short rest we decided to go back to the trampoline and Lillian showed her stuff again. After that we all looked at each other and started to think we were done.  I asked the girls and a past promise Papa made was brought to my attention.  The big yellow slide was to be done one more time and this time with a grand daughter's request.  Lillian sat in my lap and asked "Papa could you go with me down the slide?"  I couldn't say no.  I looked at the long run of stairs and told myself just take your time and you will never regret doing it.  I was right, that was the best slide ride I had ever taken in my life.  Whew, let's go home.  CREAM PUFF!!  We almost forgot the cream puffs.  Immediately Sam asked where is the cream puff place.  Unfortunately, I had to tell him he only has to push me across the entire fairgrounds to get there.  No complaints from anyone and we got our dessert.  Now it is time to leave.  All we have to do is walk from the back of the grounds to the front where we parked.  We were almost to the parking lot when Lillian noticed she had not gone on any rides like the Ferris wheel or roller coaster.  Were we lucky that we had to walk right through the mid-way to get to the car.  "12 tickets please " said Allison as she told the girls that they will be allowed 2 rides and we are done.  Ride #1 spinning tea cups, check.  Ride #2 roller coaster , check.  Both Lillian and Caroline had experienced the WI State Fair and I got to do it with them.  Thank God!  Thank God! Thank God!  I am paying physically today for my actions yesterday but, I can also re-live the experience mentally forever.  Keep praying.

This weeks update

I had an unusual week.  The "good day, bad day" scenario played out.  I had a couple of days that I would definitely consider bad.  I was not able to get myself out of bed because of the pain.  Vic did a wonderful job helping to manage the pain and learned as much as me in the process.  It is very important to stay ahead of any discomfort.  If you let it get away from you, you will not catch up and a day in bed will probably be the recipe for the day.  The hospice nurse is stopping in three times a week now and between her and Vic I feel very well taken care of.  We also met with our social worker  this week.  This will be an every two week occurrence and the information he can give us is invaluable. As part of the hospice package, the social worker makes certain you get what you need to be comfortable.  I mentioned we are going to try to make it to the State Fair this week with the grand kids.  I told him if I could handle this physically we would rent a wheel chair and go for the afternoon.  His immediate response was "what kind of chair do you need?". After talking about what would be best for me he ordered a Transport chair that will be delivered to the house in a couple days.  He said if you need something ..."Just Ask!"  My comfort is the goal and they mean it.
Overall it was a good week.  Allison is still here with the kids and I get to see them almost everyday.  Having them here with me has been so great for both them and me.  I thank Allison for staying as long as she can.  My older brother and his family came in from Minn to spend some time with me, which I really appreciate.  Vic's brother and family also stopped by last night. Sam and Ali came by after long nights at work.  What else can you do but have a huge family bon-fire, which we did.  It was a great night and it is something I will do whenever I can because I'm with family and making a smore is not physically demanding.  If God allows me to spend my finals days like this, I'll take it.  Another good week....Check!  Keep praying and I would love to hear from you.

One day at a time

Now that I have had an opportunity to put a couple of weeks together, I am understanding the final phase much better.  There is no secret like a special diet or vitamins or anything at all.  It is very simple. Everyday I will be getting a little worse than the day before.  The amount of decline may be very small but, there will a decline everyday.  When I talk about decline I am talking about a variety of different things.  Here is what has been going on lately.  Everyday I get more fatigued.  I don't need to sleep all the time, I just need to give my body a chance to gain some energy back.  It seems to take longer to recharge everyday.  My temperature is fluctuating more each day which means the amount of sweats I get is increasing.  Let me try to explain the "sweats" I get.  I can be sleeping, awake, moving or stationary and my body will do the same.  Its like someone is pouring water on my head.  I get what they call drenching sweats.  These get worse as each day passes.  My appetite will continue to get worse.  I will continue to lose weight.  These are the easy ones to deal with.  The one item that will be the toughest to deal with is the pain.  I have to keep an eye on pain meds everyday to make certain I am taking enough to stay ahead of the pain.  Unfortunately, I've been told that the actual pain will eventually outrun the benefits of the medication.  This is where Vic has her work cut out for her.  It is going to be her job to keep me as comfortable as possible until it is over.  God bless her!!
So in a nut shell, my decline is happening everyday and I have to accept that fact.  My job, with the help of everyone around me, is to stay as comfortable as possible and to be ready for the end. So far so good.  Oh yeah, time frame?  There is nothing set in stone.  Just accept the fact that I am getting worse not better and we all have to be ready.  Keep praying.

Good day + good day= Good week

I really don't know what constitutes good or bad when it comes to my situation.  From a medical standpoint I seem to be doing well because I have not had any debilitating episodes.  My vital signs have all remained in a good range for me.  The amount of pain I am experiencing is increasing but, I only had to increase my dosage of meds by a small amount.  I do feel what I would describe as "good".
Mentally things are going well.  I have had a great opportunity this week saying good bye to some of my close friends.  We were able to laugh while we relived our stories and tell each other what we meant to each other.  Now comes the best news of the week.  My grandchildren are here to see their Papa Charlie.  Matt and Allison got in last night so I will spending some quality time with all of them.  Overall I would say the week was good.  I suppose if you add up a good day everyday, you will have a good week.  So far that formula is working.  Keep praying.

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.

Treatment update

I was able to get treatment yesterday and all went well.  The doctor did not order a tumor marker for this week so I have nothing to report in that area.  The other numbers such as liver function, red and white blood cells, platelets etc. were all in an "ok" range.  I also had a visit from the newest member of my medical team, my Palliative care nurse.  I can't recall if I mentioned her and her function in past posts.  If I did, I apologize for the repetition, if not this is what she does.  She is responsible for making certain I am comfortable during the final stages of my illness.  She monitors my pain, sleep, fatigue and more.  It is up to her to act as a liaison between the doctor and myself regarding pain meds and future treatment.  Our discussion yesterday went very well due to the fact I am actually feeling better than I have felt in about 5 weeks.  I hope to have a lot more meetings like that with her in the future.  I will be meeting with the doctor next week for a review, so I will have more info.
I hope everyone has a great Memorial Day Weekend.  As you are enjoying your picnic, garden planting, going to parades or whatever you are going to do this weekend, pause for a second and give God thanks for the things you have in life.  Be honest, you've all been looking forward to a break from work, so enjoy this long weekend.  Make it count and spend quality time doing something you want to do and enjoy it.  Have fun and keep praying.

Comments

Thanks for the comments.  Regarding the pending publication of my cookbook.  I don't have enough recipes to make a book.  I do promise to write down the family favorites.  I actually have to make each dish in order to get close to measurements of ingredients.  Remember, the reason I don't bake is because you have to measure everything.  When I cook I wing it based on sight, sound and taste. I'll get a supply of note cards and do my best.

FYI-  I have treatment and blood work scheduled for Thursday.  I will keep you informed on the numbers.
Keep Praying!

I want to open this blog for a Q&A

Ever since I was diagnosed, I have been asked a lot of different questions regarding my battle.  I have noticed that it seemed much easier for people to talk to me at the beginning of the journey.  I believe this was due the fact that the majority of the information and results I was getting was mostly positive.  It was fun and exciting to talk about my treatments and how they were making my tumors "go away".  But it is true when they say, "all good things must come to an end" especially when it comes to terminal cancer.  As I went back and read my posts from the past 8 weeks I noticed a big shift in my attitude as the news regarding my progress got worse.  I also noticed the comments and questions I received were becoming few and far between.  I want you all to know that I want to continue to interact with you, especially during the final stages.  I want you to ask questions about whatever you want to know.  Hopefully my answers will somehow help you down the road.  My main goal is to make certain that what I am going through will in some way positively affect someone else's life.  Please use the comment section on the blog with your g-mail account or send a message to chuckkatula@hotmail.com and I will answer on the blog.  I look forward to hearing from you.  Keep Praying!

33 wonderful years

I want to take the time to wish my lovely bride a Happy 33rd Anniversary.  Vic, thanks for everything you do.  I love you!

Increase treatment

I met with the oncologist yesterday in order  to review my numbers and tweak my treatment plan.  As I stated in my last post I believe the hardest parts of my latest surgeries are behind me.  I was told that the complete healing process would be more like 4-5 months.  I will still have to put up with some pain from scar tissue and general fatigue.  I think I can handle that.  The doctor also told Vic and I that the node they found in my bladder was colon cancer.  This was bad news that the cancer has spread to my bladder but, it was good news that it was colon cancer and not a new strain that would have to be treated differently.  My liver and kidney function numbers are on the high side of normal but ok for me.  What's kind of funny is my platelet count is actually on the high side.  This is good news for our decision to add Xeloda back into the mix.  The Xeloda is a pill form of chemo that I will take twice a day for 2 weeks and then take one week off.  I was on the Xeloda for quite a while until my platelet count was not sufficient to support it.  So, as of now I am taking a weekly infusion and daily oral chemo.    The last thing we looked at was my tumor marker.  Unfortunately it went up 17 points.  My doctor told me he was no longer going to chase the marker number.  Instead he is going to make certain that I, as his patient, is comfortable.  This actually made me feel good.  I have always said that I will trust in the Lord for my outcome and I feel this is the right decision based on God's guidance for my medical team. I will have another appointment next week and we will see how the new treatment is working.  Keep praying.

Quick update

This week of re-coup from the surgery has gone well.  I was able to have treatment on Thursday and my numbers looked good.  All my liver and kidney function numbers were in the normal range.  The good news was that my tumor marker went down.  Now, it only went down by 8 points but it didn't go up.  I meet with the doctor for a surgery follow up on Monday.  If the healing process is going as planned we should be able to increase my chemo regimen by adding Xeloda back into the mix along with the Erbitux.  I'm pretty excited because I think I'm close to only having to worry about cancer treatment and nothing else.  I'll let you know.  Keep praying!

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!

This week ...just pain in my gut but, joy in my heart

This week was a crap shoot for treatment.  The medical team decided I should take the week off.  Actually I'm glad they did.  When I had my colon surgery I still possessed my super fast healing powers.  Unfortunately, 15 months of chemo has wiped it out and I am not healing well.  I am feeling a lot of pain throughout my midsection and this makes it very hard to get comfortable to rest.  My sleep patterns are strange at best.  Sometimes I will sleep for a couple hours and other times I cannot sleep for more than 20 minutes.  Time for the snowball affect.  No sleep, no appetite and crabby.  Not fun to be around!!  SORRY everyone.  It will get better everyday and hopefully the spleenectomy will have done it's job and we can get back at.

Now, for the joy.  Another one drops off the bucket list.  As of Friday Sam and Ali are officially engaged, with a ring and everything!!  This is great news and we will all be celebrating when everyone is over for Easter.  Oh yeah, we are still doing the famous Easter Brunch.  Thanks Vic for filling in for my depleted super powers  Happy Easter- He is Alive!!

I'm home

Finally I'm home from the surgery.  I was not able to post during the time I was there due to a couple items.  #1) the internet hookup at the hospital was terrible and every time I felt I had time to do something I could not get in.  #2) I was very sore and based on the drugs they were giving me, I kinda lost my mind for awhile.  Everyone there felt it would be best that I don't write anything.  The combination of oxcy, and morphine for pain and 3 or 4 other meds for nausea caused me to hallucinate.  I hear it was very funny.  Just for an example, I woke up from a 5 minute nap.  I firmly believed I was in my own home.  I asked Vic where did we get that ugly picture on the wall and she told me she bought it for $200 dollars.  I got really mad and then when I realized everyone was laughing, I knew I was in the hospital.  I spent most of my time sleeping.  The good news is that my platelet count was up to 333 as of this afternoon.  The surgeon referred to my spleen as huge and had to make an additional 7 inch incision to remove it.  I will hear tomorrow if my chemo treatment will stay on schedule.  I think it will.  Thanks for all the support from everyone.  Keep praying!!

Surgery week

It's been a long week.  I have had to prep for my spleen removal.  Since the spleen fights bacteria in the blood, on Monday I had to get inoculations for pneumonia, meningitis and HIB.  On Wednesday I had to get blood work done for a type and crossmatch because I will need platelet transfusions before, during and after the surgery.  I've received 3 different calls from the hospital to review my procedure, pre register me and inform me what I can and can't do before the surgery.  I think I am ready to go.  I will admit, the closer it gets the more nervous I am getting.  When I had my colon surgery I didn't have any time to think about what was going on.  I was told at night I needed the surgery and the next day I was under the knife.  I've had almost a week to think about this one and I think my mind has gone over every scenario possible.  I know Vic has also been very tense this week.  I ask for your prayers that we have a good outcome tomorrow and I heal quickly so I can get back to the fight.  I'll talk to you soon.

To spleen or not to spleen....

What a week.  I have not relayed any info regarding my doctor and hospital visits this week because I did not know what was going to happen.  Now I do, so here you go.  I met with the Oncologist on Wednesday for a review of my progress.  The numbers all looked good.  My liver function was still ok and my tumor marker went down again to 78.  I was pretty happy with those results.  Then came my platelet count....63.  This was the number that the doctor was waiting for and it wasn't what he wanted to see.  He explained to us that although the Erbitux was doing a good job on the tumors now, we have to be aware that the finger infections are back and the use of this drug is not a long term option.  He went on to explain that the remaining available treatment options are all platelet driven and my platelet counts are just too low to use any of them now.  The only way to increase my platelet count is to have my spleen removed.  So, he called the surgeon and set up an appointment for us to meet with him for a consultation.  That consult took place on Friday afternoon.  Not to get ahead of myself, I still had chemo treatment on Thursday.  Our plan is to continue with the weekly Erbitux infusions as long as we can.  We will stop when the finger infections get to the point of being dangerous.  Our best estimate is 2 to 4 more weeks.  Now, back to Friday.  We met with the surgeon in the afternoon.  The good news is that the surgeon is the same one that did my first surgery and we really like him.  He looked at the scans and immediately agreed that my spleen is very large and needs to come out.  He feels there is a 60% chance that this will work in getting my platelet count up.  My surgery is scheduled for Thursday at 3:30pm.  The good news is that I will be able to watch some good March Madness basketball while I'm recuperating. So I got that going for me!  I'm going to take a rest now.  Keep praying.

Time to write again

It's been awhile since my last post. I've had people ask why I  haven't been posting as much as I did in the past.  I've been thinking of an answer for that question and I think I finally got it.  It has been almost  15 months since I was diagnosed with terminal cancer.  When I was initially diagnosed my emotions took off at a million miles per hour.  I did not know how long I had and I was trying to fit in as much as possible in the time that I did have.  As time went on and my treatment started to show some promise my urgency to get things done seemed to slow down.  I shifted my energy towards the treatment and the chance that it was working to cure me.  Unfortunately this was short lived.  The side effects of the treatment was too much to handle and we had to slow down.  This gave the cancer a chance to get the upper hand and the tumors began to grow once again.  Now we had to re-group one more time.  We decided to go back to a treatment regimen that has worked on the tumors in the past but, has shown some very nasty side effects.  This is were we are now.  I am back to weekly treatments.  My blood work numbers have been good but, the finger infections, upper body rash and low platelet count are all back.  The big question is how long before I have to stop this treatment and switch to something else.  Is this going to be the norm for my future? Am I going to be jumping from treatment to treatment, side effect to side effect and gain no ground?  Here is the answer to my initial question.  I am not in denial of my illness, I am just ignoring it.  This is why I am not writing about it. I feel I have nothing new to say.  I'm spinning my wheels.  I definitely needed a push to get off dead center and I got that push.  Making a sort of spur of the moment decision, Vic and I decided to drive out to Baltimore and attend Caroline's 3rd birthday party.  Well, we did it and we just got back.  This trip was just what I needed to get my mind back on track.
As I mentioned, we did drive out.  This drive turned out to be a blessing in itself.  This was the first time Vic and I had the opportunity to spend time together without any distractions.  It was a 26 hr round trip and I loved it.  We were able to talk about the past, the present and the future.  We laughed, cried and generally had a good time being alone together.  We decided we will definitely do it again in the future.
It has always been tough to have Matt and Allison living out east.  Even though we spend a lot of time on the computer and the phone, there is nothing like being able to give them a hug, talk over a cup of coffee or go out to dinner together.  Any time I am able to spend time face to face with them is a true blessing.  Thanks you guys for the opportunity.
I have said it before and I will say it again.  Spending time with the grand children is the best medicine I could ever ask for.  Seeing my two girls and my little boy renew my urgency to make certain I am getting the most out of the time I have.  This is not some sort of doom and gloom vision of my life, it is a wake up call to continue to pray for a miracle but, while I am waiting for God's will, I will try to get the most out of what I have left.  I think this is something we should all do.  It certainly doesn't take much time, money or energy.  What did I do with the kids over the weekend? Musical chairs, reading books, watching them dance, allowing them in my bed in the morning to watch cartoons, playing make believe, tucking them in bed at night and saying prayers together, making pancakes together, walking Lillian into school, attending Caroline's birthday party, feeding Owen, walking him to sleep, cuddling him on my chest while he naps, making him smile and coo just to name a few.
If you feel your life in spinning it's wheels, try some of these little things with the people you love. I promise you will feel better.  I know I do.  Keep praying!

Treatment update

I went in today for my weekly blood work and treatment. The results were cautiously optimistic.  Once again my platelet count went down to 79 from 93 for no apparent reason.  We are starting to get used to this and it is not bothering us as much at this point.  My tumor marker news was great.  It went down to 103 from 125.  All of my liver function numbers looked good.  The not so good news was that my finger infections are coming back.  At this point they are not real bad but I have to watch the situation very closely.  Based on the good results we are getting with the Erbitux, we will continue as long as we can.  If we have to stop, we will probably just take a break and go back to the same thing again until it stops working.  Overall I feel pretty good for someone who has been on chemo for 14 months.  My weight has stayed steady and my fatigue level is not real bad.  I'm looking forward to some nicer weather so I can go outside and get some exercise.  That's it for now, I thank God for the positive news and I thank all of you for the support.  Keep praying.

The fight is back on

I had a very good appointment today.  My blood work finally came back with positive results.  Our plan of attack was to take only one chemo drug at a time and see what each one does to my body.  We know the Avastin and Xeloda both affect my platelets negatively, so we opted to take Erbitux by itself. Well, the results were great.  My platelet count went up to 93 and more importantly my tumor marker went down to 125 from 192.  This was after one round.  The past has shown that the Erbitux does a good job on the tumors but the side effects are dangerous.  The finger infections that are caused by the drug can become serious enough to spread infection throughout my body.  Any infection could cause the ultimate side effect, death.  We just have to watch and weigh the options weekly.  So far, so good my fingers show no problems.  I said in an earlier post that this will be a "punch-counter punch" type of treatment.  So, take that cancer.........POW!  Keep praying.

Back in the saddle

 It's been a long time, but as of yesterday I've been deemed healthy enough to accept chemo.  The past couple of weeks have been very difficult.  I've battled low platelet counts, sinus infections and the common cold.  Unfortunately, the time that it took to take care of these problems gave the cancer an opportunity to grow and grow it did.  My tumor marker as of yesterday was up to 192.  If all goes well I will continue receiving a weekly infusion of Erbitux.  That's right, this is the same drug that caused my face rash and my finger infections.  It is also the drug that has shown the best results for reducing my tumors in the past.  We will stay on this drug for as long as we can knowing that eventually the side effects will probably cause us to have to stop.  We are at a point where the treatment has become more of a punch-counter punch method.  We will continue to change drugs and doses as needed to try and stay ahead of the cancer growth.  I am happy to be fighting the cancer again, but as I sit here writing this blog I'm reminded how chemo makes you feel...Terrible.  I guess I just have to allow my body to get acclimated to the drugs and continue to pray for positive results.  Once again, patience is a virtue.

I am also very pleased to be able to wish Samuel Lawrence Katula a Happy 24th Birthday.  Thank you Sam for all you have done in order to make your Dad's battle easier to cope with.  I love you!

Keep praying everyone, the fight is back on!

Little illness vs Big illness

I was supposed to start my new treatment regimen today.  Unfortunately, it did not happen.  What's stopping me from battling my cancer?  The common cold!  That's right, I came down with a cold earlier in the week and it has not gotten any better.  As of now my immune system is strong enough to fight a cold but, if I start taking chemo drugs again my system could become compromised. If that happens my little cold could turn into a lot worse.  As a precaution I was tested for the flu, which came back negative.  They also had me get a chest x-ray just to make certain I have nothing else going on in there.
I did have blood work done and the numbers were as follows.  Platelets went up to 116, the highest they have been for a very long time.  That was great news because it clears the way for a variety of different chemo options if it can stay high.  My tumor marker went up to 174.  This was not a surprise due to the fact I have been off full chemo treatment for over one month.  We are scheduled to restart next Thursday pending my overall health status.  I think I just need to rest.  That's what I'm going with...nap time!  Keep praying.

 Note: If you are asked to give a nasal swab to test for the flu virus...RUN!!  This was one of the most uncomfortable and painful things I have had to do.  The nurse started apologizing as soon as she came in the room.  Picture a long Q-tip with a pipe cleaner on the end.  Shove this in your nose so it goes down the back of your throat.  You know when it's in because the pain is intense.  The bad news is you have to do both nostrils so you know what's coming on the second one. If it is not life threatening my advice, don't do it.

Remember

I've been thinking about writing this post for quite awhile now.  After receiving the information from my latest scan and blood work, I think the time to start this post now is a good idea.  This will be a long post and an incomplete post.  I will be adding to this post up until the day I die.  The idea behind this post has to do with how I will be represented in the "Remember When" conversations that my children, grand children, other family members and friends have in the future.  As we get older we pass along memories of what we feel were interesting and important to our family and friends.  Having a grand parent tell a grandchild what they did or said when they were younger is an important experience for both of them.  Just think how many times you sat and listened to your father or grandfather tell you a story that started with "I remember when you were little you said......".  This is a list of items, statements or comments that have impacted me, that I want to be able to have on the record, so they can be passed along.  I am going to start from the time I was diagnosed.  Some of the items I put on this list will not make sense to anyone other than the person who shared it with me.  I will try to keep the timeline the best I can but, I'm sure I will make a few errors.  I will add to the list as time goes by.  This list is to be shared with family and friends.

• Your liver numbers are high so we want you to have an ultrasound
• Based on the ultrasound, we want you to have a CT scan
• You know you have a large tumor in your colon
• No bag
• Your liver is 80-90% compromised with tumors
• Max maybe 2 months
• Treatment is working very well
• Packers lose after 15-1 season
• There is more than medicine at work here
• Easter
• Are my prayers working?
• So, how are you feeling?
• I want to be the mam
• What would you like to drink sir?
• I'll have a pizza with spiderwebs and worms please
• Good morning Papa....can we watch a show
• Let's build a fort
• Your blog has inspired me
• How are your fingays?
• Can I see Ramzi?
• Wicked- the musical 
• Dance Party
• BCC golf with boys
• Zoo
• Can you read me a story?
• Papa, let's do it again
• Can you make pea soup?
• I'm dry
• It's going to be a boy
• Your CEA is going up
• He has to go home so he can have his surgery in Wisconsin
• 4 year old soccer games
• Thanksgiving with family 
• Singing like angels
• School programs
• Charles Owen
• No, you cannot travel
• Ramzi sit.....and paw
• Get down dog!!
• Finger Dance
• Sleep over in Princess Room
• Schooch over
• Movie and popcorn
• Cancer spreading
• Owie on face and fingays again
• Medical A-Team, Vic-Allison-Matt
• The eternal optimist
• I love you one thousand times plus 27
• I luuuuuuuuv   ya
• Gooooood Morning- What's for breakfast?  Pizza and alligator toes
• Good. Feel good
• Status Quo
• Every body is different
• I'm sorry, this is going to be uncomfortable
• This was not in my long term goals
• My body functions are all controlled by medication
• Will you be my valentine? No, Mason is already my valentine.
• We are going to see Spiders Web
• He's the only kid that will need his Fisher Price golf clubs re-gripped
• Great season Northstars
• 1/2 price apps
• Nana no pants