tag:blogger.com,1999:blog-82916672849170338092024-02-20T16:39:37.230-06:00BlessedInformation and thoughts as I battle stage 4 colon cancer that has spread to my liver - Chuck KatulaChuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.comBlogger231125tag:blogger.com,1999:blog-8291667284917033809.post-52279301795611125622013-09-25T22:27:00.000-05:002013-09-25T22:27:11.450-05:00The End is Truly the Beginning
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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. <o:p></o:p></div>
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<br /></div>
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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. <o:p></o:p></div>
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<br /></div>
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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.
<o:p></o:p></div>
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You have all prayed for Dad during this time and I know that
he will be watching over every one of you from Heaven. <o:p></o:p></div>
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<br /></div>
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--- Sammy<o:p></o:p></div>
<!--EndFragment-->Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com4tag:blogger.com,1999:blog-8291667284917033809.post-46002402285747903172013-09-10T18:03:00.000-05:002013-09-10T18:03:04.725-05:00Sorry for the DelayHi everybody,<br />
<br />
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.<br />
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!<br />
- 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-<br />
<br />
"Ohana means family, family means nobody gets left behind. Or forgotten" - Lilo from <i>Lilo and Stitch</i><br />
<br />
<br />
<br />Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com3tag:blogger.com,1999:blog-8291667284917033809.post-39860127609160961342013-08-23T10:11:00.001-05:002013-08-23T10:11:09.369-05:00Not late, just following directions<span style="text-align: left;"> 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 </span>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. DadChuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com1tag:blogger.com,1999:blog-8291667284917033809.post-45541996233058070352013-08-10T11:08:00.000-05:002013-08-10T11:08:25.748-05:00What'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!<br />
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. <br />
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!Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com7tag:blogger.com,1999:blog-8291667284917033809.post-38069667961209830772013-08-02T16:53:00.000-05:002013-08-02T16:53:16.515-05:00The day after the FairI'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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com3tag:blogger.com,1999:blog-8291667284917033809.post-15366616277687365602013-07-27T10:14:00.002-05:002013-07-27T10:14:59.112-05:00This weeks updateI 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.<br />
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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com6tag:blogger.com,1999:blog-8291667284917033809.post-83165130615535527402013-07-16T12:05:00.000-05:002013-07-16T12:05:52.561-05:00One day at a timeNow 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!!<br />
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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com2tag:blogger.com,1999:blog-8291667284917033809.post-53983014740260001022013-07-13T09:53:00.001-05:002013-07-13T09:53:03.381-05:00Good day + good day= Good weekI 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".<br />
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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com2tag:blogger.com,1999:blog-8291667284917033809.post-48693483559666650332013-07-07T11:22:00.000-05:002013-07-07T11:22:09.239-05:00 One week, Good weekAs 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.<br />
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.<br />
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.<br />
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!Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com1tag:blogger.com,1999:blog-8291667284917033809.post-68693389752932940162013-07-02T19:28:00.000-05:002013-07-02T19:28:17.047-05:00"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.?<br />
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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com2tag:blogger.com,1999:blog-8291667284917033809.post-41573182585808097082013-06-27T22:12:00.000-05:002013-06-27T22:12:51.972-05:00The 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.<br />
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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.<br />
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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com3tag:blogger.com,1999:blog-8291667284917033809.post-12973338845703021192013-06-24T22:57:00.001-05:002013-06-24T22:57:52.618-05:00UpdateHi everybody,<div>
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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. </div>
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"Therefore I say to you whatever things you ask when you pray, believe that you receive them, and you will have them."</div>
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- Mark 11:24</div>
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Keep praying!</div>
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Sam Katula</div>
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Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com4tag:blogger.com,1999:blog-8291667284917033809.post-23620874451079645032013-06-18T20:58:00.000-05:002013-06-18T20:58:49.313-05:00Good news.....Bad news.....Crystal Ball newsI'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.<br />
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. <br />
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.<br />
Readers digest version of the discussion we had with the doctor is to follow:<br />
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.<br />
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.<br />
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.<br />
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!<br />
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.<br />
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Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com2tag:blogger.com,1999:blog-8291667284917033809.post-8748297089611569482013-06-10T11:42:00.002-05:002013-06-11T06:06:50.659-05:00Since 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.<br />
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."<br />
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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com1tag:blogger.com,1999:blog-8291667284917033809.post-7878692279055990512013-06-01T15:10:00.000-05:002013-06-01T15:10:49.668-05:00Another treatment plan is in my futureI 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.<br />
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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com0tag:blogger.com,1999:blog-8291667284917033809.post-5825091553922832662013-05-24T09:08:00.001-05:002013-05-24T09:08:52.110-05:00Treatment updateI 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.<br />
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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com1tag:blogger.com,1999:blog-8291667284917033809.post-3017095579960749712013-05-21T14:45:00.000-05:002013-05-21T14:45:56.801-05:00CommentsThanks 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.<br />
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FYI- I have treatment and blood work scheduled for Thursday. I will keep you informed on the numbers.<br />
Keep Praying!Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com2tag:blogger.com,1999:blog-8291667284917033809.post-73419074530990222402013-05-18T21:31:00.000-05:002013-05-18T21:31:19.636-05:00I want to open this blog for a Q&AEver 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!Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com7tag:blogger.com,1999:blog-8291667284917033809.post-56107071890616827142013-05-17T10:41:00.000-05:002013-05-17T10:41:01.173-05:0033 wonderful yearsI want to take the time to wish my lovely bride a Happy 33rd Anniversary. Vic, thanks for everything you do. I love you!Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com0tag:blogger.com,1999:blog-8291667284917033809.post-64561037827216926782013-05-10T13:16:00.000-05:002013-05-10T13:16:01.294-05:00Increase treatmentI 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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com0tag:blogger.com,1999:blog-8291667284917033809.post-4255867462231299802013-05-04T10:17:00.000-05:002013-05-04T10:17:04.516-05:00Quick updateThis 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!Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com0tag:blogger.com,1999:blog-8291667284917033809.post-87680374557844239832013-04-30T10:13:00.000-05:002013-04-30T10:13:33.086-05:00Latest surgery updateI 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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com0tag:blogger.com,1999:blog-8291667284917033809.post-60385817352098885142013-04-29T11:32:00.001-05:002013-04-29T11:32:47.313-05:00FamilyI 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!Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com0tag:blogger.com,1999:blog-8291667284917033809.post-59312467657846614022013-04-26T09:20:00.000-05:002013-04-26T09:20:49.146-05:00Just the factsThe 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.<br />
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.Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com0tag:blogger.com,1999:blog-8291667284917033809.post-78398985508397316542013-04-24T13:10:00.000-05:002013-04-24T13:10:25.619-05:00An 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. <br />
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.<br />
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!!!Chuckhttp://www.blogger.com/profile/07125318033675719606noreply@blogger.com0