The best laid plans....Blah Blah Blah

For those of you who haven't heard, my grandson Charles Owen Katula was born last Thursday.  Both Vic and I tried our best to time our visits out east in order to be there for his birth.  I went out a little early and Vic stayed a little later.  Unfortunately, we both missed his arrival.  We were able to see him via the computer but it wasn't enough.  I had to hold this boy!  Vic had this week off and I have everyday off so the choice was simple....ROAD TRIP!  That's right, we decided we would drive out to Baltimore, stay a couple of days, meet our grandson and get back for the weekend.  The only thing I needed to do is change my blood work appointment from Thursday to today so we could leave early on Wednesday.  The oncology department was able to change my appointment, and I was able to get my numbers today.  This is where the "best laid plan" part comes into play.  My numbers were not good at all.  The two major things we look at, in order to mark my progress, are platelet count and tumor marker. My platelet count is at the lowest it has ever been at 38 and my tumor marker went up 20 points to 137.  Based on these numbers the Oncologist feels I am to sick to travel.  He said he doesn't know exactly why my platelets are so low and feels there is a good chance they may go lower.  The chance of me having an internal bleed is just to great for him to allow me to leave the area.  The tumor marker increase is much easier to explain, the tumors are actively growing again.  It seems like we are going to have a battle over what is the right balance of chemo drugs vs tumors vs platelets.  This could take some time and I pray for guidance and patience.  I am devastated that I cannot hug and kiss my grandson now, but I know God will allow me to see him soon.  So in the meantime, I have to be satisfied with pictures and FaceTime in order to get my "Owen fix" and believe me he is cute enough to pull it off.  Keep praying!

He is finally here!!

I am so happy and honored to announce the birth of our first grandson.

Charles Owen Katula   (He will be called Owen)
9 pounds
23 inches

Yeah, thats right,  he's huge and so beautiful.  Allison is also doing well. (Matt too)  More info as I get it.

Merry Christmas 2012

Merry Christmas to everyone.  As I said in my last post, what a difference one year makes.  Last year we were all celebrating Christmas with the black cloud of my cancer diagnosis hanging over our heads.    We had a full house.  Matt, Allison and the girls came home from out east.  Many friends and relatives stopped by.  Everyone wanted to show their support and share in what was supposed to be my last Christmas celebration.  Well, here we are a year later and I'm so blessed to be able to celebrate another Christmas but, with a great difference.  The storyline this year is one of life, not death.  My illness has not gotten the best of me.  God has allowed me to continue to live and enjoy the wonderful events over the past year.  The shadow of death has taken a back seat to the miracle of life.  The main event that is  driving this years Christmas celebrations is the pending birth of my first grandson.  So far we have tried our best to time things up in order to celebrate the birth and Christmas together.  I went out east early to see the girls and maybe the "boy"..... nope!  Vic came out a little later so she could be there for the birth and get back home in time for Christmas....... nope!  As of today, Vic is still out there and the baby is still in there.  God only knows when the time is perfect for our little guy to arrive, I just hope it is soon for Allison's sake. ( Can you say, Uncomfortable!!)  So, as I write this entry on Christmas morning, I am happy to be able to concentrate on a pending birth and all of it's future implications.  It certainly is a much better alternative to last years thoughts.  We may have to celebrate Christmas a little later this year when everyone is available but, we will celebrate.  We will celebrate both the birth of our Lord and the birth of a son, brother, grandchild and great grandchild.  Someday he will appreciate how he has made this a special Christmas for me. He has allowed me to put my problems aside and enjoy the season for what it should be enjoyed for.  The celebration of life and the love of family and friends.  Keep praying!        

Still no baby

Wow, I just re-read my post from last Christmas Eve and what a difference a year makes.  Last year I had a house full of family eating and enjoying each others company.  This year I am here with just  Sam and Ali.  That's right, no baby means Vic stayed out in Baltimore.  Allison's parents are scheduled to get to Matt and Al's house on Wednesday so Vic is staying out there until then.  We decided to have our Christmas Eve celebrations on Thursday so Vic can be here.  We did open presents with the girls via the computer earlier tonight.  Both Lillian and Caroline were very happy with their dolls, markers, nail polish and more.  I just left those girls and I miss them already.  I hope to give a better update on my grandson, like length and weight, very soon.  I hope Santa got you everything you wanted.  God bless all of you.

Long Day

It's Wednesday night and I am beat.  I left Baltimore very early this morning in order to make my treatment appointment today.  More about my trip later.  First I'll update you on my day at the hospital.  Thanks to Sam for picking me up from the airport and spending his whole day with me.  It all started at 9am with blood work.  My results were not very good.  I still have a low platelet problem which is wreaking havoc on my treatment.  My tumor marker went up to 117 from 110.  Fortunately my liver function is still ok.  After the lab work was complete, Sam and I met with the Oncologist.  He was concerned with the low platelet count and decided to suspend the chemo pills from my treatment in the hopes this will give my body a chance to produce more platelets.  He did not want to fully stop the chemo so he decided to continue the infusion of Avastin.  I have a feeling that if this platelet thing does not get better we may have to have the spleen removal surgery.  Both the doctor and the nurse told me not to worry abut the increase in my tumor marker and to give this new treatment an opportunity to work.  At this point I have no other options so I have to stay positive.  Our meeting with the doctor took longer than usual so I lost my spot in line for the chemo suites.  It is sad to see the large number of people in need of chemotherapy.  This cancer is a bad thing.  We eventually got in, got my infusion and  got home late afternoon.  Finally, nap time!
Now, about my trip out east.  Awesome!!!! I am so glad I decided to go.  The game plan of being out there when Allison has the baby did not work out (stubborn little guy) but, seeing the girls was well worth the trip.  I was able to play, draw, read, watch movies and more from the time I got up until the time they went to bed.  Every morning started out with both girls waking me up and watching cartoons together before we had breakfast.  They were the best alarm clock I could ever ask for.  I think the highlight of the trip for me was being able to attend the girls Christmas concert.  I thought this would be very emotional for me to watch knowing it may be the only one I may ever see and I was right.  The funny thing was it was not a sad moment, it was a very happy moment thanks to Lillian.  Caroline and the 2 year olds sang first and like most 2 year old concerts the teacher was the only one singing while the kids stared into the crowd.  Very cute!  Then came the 4 year olds and our little performer.  Once the music started our Lillian was belting out the songs.  Every word, every note and every movement was perfect and very, very loud.  When it comes to performing this girl does not have a shy bone in her body and the joy I felt was overwhelming.  Thank you sweetheart, you made Papa's day!
Now, Vic is still out there and hopefully this little boy will grace us with his presence before she leaves.   That would be great for Vic and especially great for Allison, believe me she is ready.  I fully expect my next update to include the information on my new grandson.  Keep praying! Stay positive!

1st numbers from new treatment

I went in yesterday for blood work.  Based on the past couple months of cancelled treatment, finger problems and more, I was really looking forward to some good news.  Well, it wasn't as good as I was hoping for.  My liver function numbers were unchanged and remain on the high side of normal.  My hemoglobin or red cell numbers are low which is the cause of some of my fatigue.  I also have to watch for abnormal bleeding and bruising that can happen with low red cell numbers.  My blood pressure is now on the high side.  They prescribed some medicine for me to curb this problem. (Yay, more pills) These problems are all a direct side effect of the Avastin and I am told not to worry, we will just have to keep an eye on these things.  My tumor marker did not go up but,  it only went down by 1 point.  I have to look at that as good news because it did not go up and it has only been one treatment so, I'll take that for what it's worth.  It is good to be back on treatment as opposed to doing nothing.  I just have to be patient and let the medicine do it's job.  I also have to continue to pray and allow God's will to be done and accept the results of both.
Now I do have some real good news!!  The best way to tell you what's going on now,  is to start at the beginning.  Approximately 2 months ago Vic and I decided we would go out to Baltimore to see the girls sometime in December. We selected a week in December that would allow us a chance to celebrate Christmas and more importantly we might be out there when Allison has the baby.  We booked the flights.  Fast forward to my new treatment plan and this is where the wrench got thrown into our plans.  My second round of treatment fell in the middle of our trip so we asked if I could reschedule it.  The answer was "absolutely not, change your vacation plan, this treatment is too important  too your outcome." I did not like the answer but, we decided it would be best for me to stay home and Vic would go out by herself.  This did not go over real well with both the girls and Allison, they wanted me out there.  Now Allison went to work to solve the problem.  She called Southwest Airlines and had my flight changed, for no charge, and booked me new flights in between my appointment yesterday and my treatment next week.  To make a long story short, I am leaving for Baltimore tomorrow morning and returning in time for my treatment next week.  Vic will keep her flights and we will overlap our trips by a few days.  WIN, WIN, WIN, that's how Allison described it and I agree.  God's will is not only for the treatment, it's for everything around us.  Thank you Lord!!

One "weak" later

I wanted to give my new treatment a week before I commented on it.  As you can see in my title, the main side effect I am facing is weakness.  This new drug feels very similar to the first chemo drugs I was on.  The first few days after the infusion are the worst.  I feel very tired and my muscles and joints are very sore.  The good news is that as time goes by I am starting to feel better.  I don''t know if this is my body getting used to the drug or if this is the way it will always be after each infusion.  We'll see after the next treatment.
On a different note, I have to mention a couple of things that I was not certain if I would be here to experience but, by the grace of God I have been able to do so. First, putting up Christmas decorations.  We went all out this year and really decked out the house both in the front and the back yard.  It was a lot of work and I thank Sam and Vic for all their assistance.  Actually,  they did all the heavy lifting while I was more of an artistic supervisor.  It looks great.  Second and more importantly, watching Sammy coach his JV basketball team.  He is doing a great job.  It was always a great feeling when you would hear comments about how well your son was playing during a game and fortunately for me my boys earned a lot of those comments.  Now I hear parents making comments about how well the team is coached and how it's fun to watch their sons play and finally win.  It is actually very fun to get back to high school sports.  The atmosphere is very different from the college and pro scene, it is just raw sport.  The games are all exciting and the students are unbridled fun.  I am so happy I could see this! Sam is doing a great job and I am very proud of him.
I am now into my second year of what they call "survival".  That makes it sound like it has been nothing but a struggle, not true.  This has not been easy but, at the same time I have been able to truly absorb things that have been happening around me and get the best out of what they really mean to my life. Enjoying events like birthdays, holidays and even seasonal changes are more important to me now. Looking forward to special events takes my focus off the illness and gives me reasons to keep going.  So, what's next for me to enjoy?  Here are just a few..... Sam's continued success of his season, the Christmas Holidays and the big one for me, my first grandson!  Look forward to the important things that are coming up in your life. It will help you to enjoy them more when they are here.
Thanks for the support and keep praying!

Three, two, one........Treatment

Yesterday was a long day. The goal at the end of the day was to have me receive the first round of my new treatment.  It started with the usual blood work in order to check my platelet count, liver function and tumor marker.  These numbers turned out as follows:  liver function numbers were ok but on the high side, tumor marker went up to 111, which I knew it would go up since I have not had treatment for 4 weeks and platelets were at 85, which is lower than they want but close enough.(this will be watched very closely and the option of removal of my spleen is still on the table if my platelet number stays under 90.) Next was the inspection of my fingers.  The stitches were just taken out Tuesday so the healing process was not totally complete.  After some discussion we decided to go ahead with the treatment as long as I promised to watch my wound for improper healing.  I have also been having some lower back pain for the past couple weeks, so I told them.  This prompted them to immediately call radiology and set up a couple of x-rays just to make certain it was not cancer related.  It was not.  The radiologist said I have some disc degeneration caused by....You guessed it, lengthy chemotherapy treatment!  They told me to rest my back and take some anti inflammation meds.  After all this I was finally cleared to get my infusion.  The infusion itself went without a hitch, although I could definitely tell I was getting a powerful medication pumped into me.  I really can't explain the feeling, you just know somethings up when your whole body gets warm.  I also resumed the chemo pills,  so I am once again at full speed ahead.  As of now I do not feel any strange side effects, I am just very tired.  I know I will start getting my energy back as my body gets used to the meds.  I have to admit it feels good to get back in the battle and start kickin some cancer butt again.  Keep praying.

Thank you !!

I just wanted to acknowledge and thank all the people who helped me celebrate my birthday and my cancerversary. I've been asked why I would celebrate my one year anniversary of being diagnosed with cancer.  I know it sounds weird and most people would look at it as a negative but, if you were told you only had 1-2 months to live after your diagnosis and now it's 1 year later and you are still here to celebrate your birthday, you would want to celebrate too. Your messages and comments are very important to me and I love reading them.  The outpouring of support I have received over this past year has been powerful and has aided in my battle more than you could ever know.
I am starting a whole new phase of treatment this week and I will need your prayers and support as much as ever.  I get my stitches out on Tuesday and start the new chemo on Wednesday.  I feel just like I did when I was in grade school and my vacation was coming to an end and school was starting again. Well, I guess my chemo vacation is coming to an end and now it is time to start the battle again.
Thank you for your continued support.  Keep praying!

Happy Thanksgiving

Let's not forget the opportunity to give thanks today.  It seems that lately we have forgotten the reason behind Thanksgiving.  It is referred to as "turkey day" and sometimes it feels that today is just the launch pad for Black Friday.  Take the time today to give thanks for the things you have and thank the people who are special in your life.  In this fast paced world we do not always have the time to recognize what we have.  Today is the day that has been specifically set aside to do just that, so don't waste the chance.  Have a great day and thank you for all the support over this past year.  

Happy Cancerversary!

One year ago today I went in for a routine colonoscopy  Unfortunately the results from that procedure have changed my life.  The doctor found a large tumor which turned out to be cancerous.  To add insult to injury, they also told me the cancer had moved to my liver.  That is when everything went into "whatever you say mode".  We will be keeping you in the hospital.  OK.  You will have surgery tomorrow afternoon.  OK.  Drink this, swallow that.  OK.  Call your family members.  OK.  Everything will be fine.  OK.  We will do our best.  OK.  You have to make an appointment with an oncologist right away.  OK.  I was just along for the ride and what a ride it has been.  God was now at work assembling my support team.  Thanks to a great surgeon, my surgery went as good as it could.  The hospital team got me up and out in record time.  The oncologist, based on percentages, gave me little chance of survival but, he opted for a very aggressive treatment plan.  The nurses in the oncology department were always positive, helpful and caring.  My family and friends circled the wagons and gave me more energy and support than I could have ever asked for.  When God picks your team, don't bet against it.  I just lived a year longer than any of the "experts" thought I would and it's been a blast.  I have realized the importance of truly enjoying what is happening around you.  I have been shown how important family and friends are.  I have experienced the healing power of the Lord when the NP told Vic and I that there was something other than medicine at work based on my results.  My cancer may shrink my life in years but, it has caused my appreciation for my life and the people in it to grow. My goal is just to enjoy every day I have left more than the year before and tell everyone I know to do the same.  I'm going to start by making this Thanksgiving better than last year.  It shouldn't be that tough since last year I was in the hospital sipping chicken broth for my dinner.  Well, I have to start somewhere.  Thank you for all the prayers and support over this past year and God willing I am looking forward to more.    

Finger surgery update

I wanted to wait a couple days to make certain everything was going ok before I reported on the success of my surgery.  Well, everything is going well.  The surgery was performed with a nerve block and I would like to say that when the surgeon said I would feel a little pressure and a slight needle prick he was lying.  It felt like he was cutting my finger off.  Now, on a pain scale of 1-10 I would put the pain at a 5 unless I bump my finger on something, which for some reason happens all the time and then it goes up to 12.  It is amazing how often you bang your index finger on things.  Now we just have to heal as fast as possible so I can get back on treatment.  It's going to be a big week coming up for me with Thanksgiving, birthdays and my 1 year diagnosis anniversary.  It feels good to write that!  Thanks for the support and prayers.

How are you feeling?

Since my last post I have received a lot of inquiries from people asking how I'm feeling.  The honest short answer is that I feel good.  I'm able to get around, walk the dog, eat what I want and function pretty much normally.  I guess that is my definition of feeling good.  If I could not do these things I guess my answer would be that I don't feel so good.  To me it is really that simple.

Now, ask me what I am feeling and it is time for you to sit back and take time to read this.
From the time of diagnosis until today I have gone through a litany of very strong feelings.  I've tried to tie an event to a feeling.

• Surprised : When I was told I have high liver function numbers after a routine physical.
• Nervous : When I was sent to the hospital for a scan of my liver.
• Scared : When during my colonoscopy I was told I have a very large tumor and I would not be leaving the hospital until I had surgery to remove it.
• Shocked : When the surgeon showed me the amount of tumor involvement in my liver was 100 times more than I thought it would be. 
• Elated : When the surgeon told me he had removed my colon tumor without me needing a colostomy bag.
• Confused :  After my surgery I was out of it. As time has gone by I have been hearing more and more of what I said and how I acted toward everyone in my room.  Sorry!!
• Thankful : That I have the best group of family and friends as my support group to back me up on this battle.  
• Lonely : When everyone was enjoying Thanksgiving dinner and I was in the hospital drinking chicken broth.
• Grateful : That everyone pitched in and helped Vic with Thanksgiving dinner and made it  a wonderful day.
• Overwhelmed : When we saw the oncologist for the first time and we were told my cancer was  terminal and depending how treatment goes my time here was not going to be real long.
• Guilty : For allowing this to happen to Vic. This was not how it was supposed to be.  We had plans for our future that have all changed now.  She has had to take on burdens that no one should have to.  I wish it was different for her.
• Hopeful : After my first couple of treatments my tumors shrunk at a high rate and I was tolerating the chemo well.
• Inspired : The Lord has been with me from the start.  I feel blessed to receive his healing power everyday and my faith in him is stronger than ever.
• Proud : I have the greatest boys a father could ever ask for.  They have been by my side every step of the way with positive attitudes and actions.  Having the opportunity to see them perform and excel in the field of sports has fulfilled a dream of mine.  To see Matt become a great father to my grand children is wonderful.  To be able to see Sam graduate, get a job and coach is a blessing for me.
• Anxious : I just don't know what is in store for me next.  My tumors have been shrinking and then growing.  The treatments work very well and then they don't.  What's next?
• Over The Moon : Anything to do with the grand daughters. They truly make me feel like there is nothing wrong in my life.
• Tearful : Anytime I think about what I will miss with the girls.
• Joy : Finding out that I will have a grandson.  Knowing that I will be here for his birth!
• Determined :  I will do whatever I have to in order to give this cancer a good fight.
• Loved : Everyday I feel the love of my family.  It is their love that has helped me stay positive throughout this battle.
• Anger : Whenever I think about what I am going to miss.
• Peaceful : Knowing my life is in the hands of the Lord

  That is the difference between how I am feeling vs what I am feeling. Say a prayer for my finger surgery tomorrow!


 

Time for a new course of treatment

We met with the oncologist today to review the PET scan results and blood work numbers.  I will give the technical results first.  My liver function is at a good level.  My platelet count was up to 102.  This is the highest my platelets have been since June.  The main reason for this is the fact that I have not been getting my full course of chemo for 3 weeks.  More on my platelets later.  My tumor marker was up again and came in at 52, which was not a big surprise due the time off treatment.  The PET scan verified there is increased tumor activity in my liver.  Based on all this info, the doctor was not real happy with the results this course of treatment is now showing.  Just for a review, I am currently taking two types of chemo meds.  Xeloda is taken orally twice per day for 2 weeks and then I take 1 week off.    I have been taking the Xeloda from the beginning.  The major side effects I have experienced  are numbness of the extremities and it contributes to my low platelet count.  The other drug is Erbitux.  This is an infusion that I receive weekly.  The major side effects from this is my skin rash and my chronic finger infections.  I have been taking Erbitux since May.  There has been only two times that I have been taken off treatment for more than a week.  One was towards the end of June and the other is now.  Both were the result of finger infections and the surgery performed in order to fix them.  The doctor decided the Erbitux is now doing more harm than good.  There is nothing we can do to stop the finger problems and we cannot afford extended breaks in treatment.  We are switching to a new drug, Avastin.  This drug is administered via a 4 to 5 hour infusion every 3 weeks.  The side effects of this drug are numerous but we won't know how they will affect me until I'm on the drug.  The one thing we do know is that this drug cannot be used if you have any wound healing in progress because it cuts off blood supply to new tissue growth.  It does not know the difference between tumor growth or good tissue growth.  Now here comes the kicker.  The key to being able to take this drug is based on a good platelet count.  If my count is too low I will not be allowed to get the treatment.  The doctor then told us that there was another way to increase my platelet count.  The PET scan showed my spleen was enlarged.  The doctor explained that my spleen had engorged itself at the same time my liver was becoming enlarged due to tumors.  My spleen is hoarding platelets and it may have to be removed.  This is a last resort because I would have to be off treatment for 2 months and my tumors would have a free for all in my liver.  So here is how it is going to go in a nutshell.  I will have surgery on my finger this coming Thursday.  We will give it time to heal.  The chemo treatment will resume the week of Nov 26th and the usual numbers tracking will begin again.
When Vic and I left the doctors office our heads were spinning.  We both just saw that my cancer was getting worse not better.  For the first time since my diagnosis we saw the oncologist struggle with a decision about how aggressive to keep my treatment.  We felt he knows he is running out of options and he needs to use them wisely in order to optimize my treatment.  We put our arms around each other,  sighed and just kept walking.  As we turned the corner for a long walk down the hallway we noticed only one person walking towards us.  As if on cue, it was the hospital chaplin.  He stopped and asked if everything was ok and we told him we had just received some bad news.  He immediately took us to the side and we prayed together.  When we were done he anointed me with healing oil.  God knows when we need him the most and is always there.  Sometimes we get so much on our minds that we just feel overwhelmed and we forget to ask for his help.  This is what happened today and the Lord stepped in and made himself available to hear our prayers.  Now how great is that?  Keep praying and sending positive thoughts.  Thanks for the support.        

Finger update

I met with the surgeon today regarding how to attack my finger infection.  After an examination of the fingers the doctor told me what I wanted to hear.  He suggested we try another round of medication as opposed to surgery.  All he had to do is discuss this course of treatment with my Oncologist and get his approval.  That part did not go so well.  I will be scheduled for surgery ASAP.  My Oncologist wants me back on the chemo treatments right away and the surgery is the quickest way to take care of the fingers.  The good news is that they are going to be able to do this surgery on an outpatient basis.  All I have to do is get a nerve block and a local anesthetic and they can cut away, stitch me up and send me home.  The next major appointment this week will be on Thursday when I get a PET scan.  Then Friday for my meeting with the Oncologist for game planning.  It does make the week fly by!  Talk to you all soon with more updates.  Keep praying!

Cancer gave me the finger again

I had my appointment today and it did not go well.  My blood work numbers did show some good things with my liver functions at a good range and my platelets up to 80 from 62.  The rest was downhill.  I failed to mention in my last week numbers update that my tumor marker went up 10 points.  This week it went up 4 more points and sits at 34.  I don't like that the number is going up but I can accept it knowing I haven't had an infusion for two weeks.  What I'm having a problem with is the fact that they cancelled my infusion again this week because of the finger infection.  Plus, to add insult to injury, I have to see the surgeon again in order to take care of the problem.  I will see the surgeon next week Tuesday for a consultation.  There is a chance that if I need a procedure it could be done in his office since only one finger is really bad.  Next week will be a week full of information.  I meet with the surgeon, I have a PET scan and a meeting with the oncologist to review everything that has been going on.  One more thing that has got me a little on edge is the fact that I am getting a cold.  Normally this would not be a problem but, I am told with my immune system compromised by the chemo I have a much higher chance of developing pneumonia from a common cold.  I've said it before and I'll say it again "No one said this would easy."  I have to continue to remind myself how far I have come since the beginning.  Most importantly I must put my trust in God and his plan for my future.  Keep praying and stay tuned!  

Quick finger update

I've completed 4 days of antibiotics and I have 3 to go.  Unfortunately the infection in my fingers does not look like it is getting better but, it is not getting worse.  Hopefully come Friday I will show some improvement and I will not have to see the surgeon again.  I can't wait to get back to fighting the cancer instead of all the other problems.  Pray for good news during my Friday appointment.  Thanks!

Deja Vu

I just got back from my weekly treatment appointment.  I had to meet with the NP before my treatment because I did not receive treatment last week due to the fact I was out by Matt and Allison.  Unfortunately I got some not so good news.  My platelet count was way down, 61 vs 97 two weeks ago.  This number prompted them to cancel my treatment for this week.  I will continue to take my chemo pills for next week and then we may alternate between the infusion and pills as opposed to taking them together.  Now, to add insult to injury, the infection in my fingers is coming back.  We are going to jump on this right away with antibiotics and soaks with bleach water.  If this does not work, I have to meet with the surgeon again.  When I was originally told I had cancer, I wondered how this was going to affect me physically.  I knew chemo was nasty and made you feel crappy.  What I didn't know was that the side effects of the chemo would cause me more physical problems than the cancer itself.  Loss of feeling in your feet and hands, acne type rashes, infections in fingertips and toes and that overall crappy feeling are all from the treatment, not the disease.  It just doesn't seem fair.  Then I am reminded that cancer has one side effect that is much worse than any other and I put everything back in perspective.  I just have to remember it's all God's plan and I should do my best with what I've been given.  Keep praying!  

Back to reality

WOW, what a great long weekend!  Now that I am home I think I will take a rest.  This was a weekend jam packed with fun from beginning to end.  Pumpkin farm, Lillian's soccer game, the girls Fall Fest at their school, a visit to Gettysburg, attending the musical Wicked, carving pumpkins and just plain old goofing around were the highlights.  It felt lonely this morning not having the girls wake me up to watch cartoons with them before breakfast.  The memories from this visit are wonderful.  Watching Lillian play goalie and making a great save during her soccer game made me so proud.  Seeing Caroline at her school interacting with friends and playing around makes me realize how old she is getting.  Watching Lillian's eyes get as big as saucers as the lights went down in the theater when the play began and then seeing her mouth the words to the songs as if she was on stage, showed me the talent she has.  These are the times that I forget about my illness.  I can't think of anything else other than enjoying being the girls PaPa.  No medicine can do for me  what being with my grand daughters does for me.  Unfortunately, when I get home my mind goes back to reality and I think about all the things I might miss if I can't beat this thing.  Time to pray and pray some more.  I pray that God will allow me the opportunity to see my grand children grow up.  Not just the ones who are here but the ones who are yet to come.  I know this is possible because the Lord has allowed me to be here and enjoy weekends like I just did, even after I was told I would not make it this long.  I look forward to being around for many more.  I would also be remiss if I did not mention how great Matt and Allison were during this trip.  I really miss having them around.  Allison especially was a trooper with all the chasing around while she is 7 mos pregnant with my first grandson. (Yahoo!)  Thanks again you two! Keep praying everybody.

Hello Baltimore

I am spending a long weekend with Matt, Allison and the girls out in Baltimore.  I was given permission by my doctor to skip my chemo infusion this week so I could make the trip.  How great is that!  We got here yesterday and have a full slate of activities planned.  Vic is with me.  It has been quite awhile since we were both out here together, it is wonderful.  So far we went to the pumpkin farm and everyone picked out a pumpkin for carving.  I think we will do that tonight.  I hope this does not turn into a big competition as to who can carve the best pumpkin but, when Matt pulled out his Dremmel tool I knew I have to be on my game tonight.  May the best man win, which will be me.  I've said it before that spending time with the girls is the best medicine I could ever get.  Well I am ready for an overdose!!  It is going to be a great weekend.  Keep praying.

Numbers update

I had my usual weekly blood work and chemo infusion yesterday and I am pleased with the results.  These numbers are the results after 2 weeks of going back to a 100% dose of the Erbitux drug.  The results are moving in the right direction.  My liver function is still good.  My platelet count actually went up a little and like usual we don't know why.  The most important number was my tumor marker which went down a little from 21.83 to 20.70.  Yes, I am using decimal points in order to get the most out of the decrease.  My numbers have been staying pretty consistent since June so we will continue on this course of treatment and look for continued small improvements.  Have a great weekend!

Fighting Cancer?

If you haven't noticed the abundance of pink this month, you've had your eyes closed.  This month is breast cancer awareness month and the "pink" is everywhere.  The NFL has allowed it's players to wear pink, there are runs and walks almost everyday.  The White House is even bathed in pink lights at night.  This is a national event that anyone with cancer should be pleased with, right?  Wrong!  I have been doing a lot of reading lately and the number of articles that have been written about cancer victims who are upset with "pinktober" is unbelievable to me.  The complaints range from people who are upset with the amount of money that actually goes to cancer research, to people who feel that breast cancer is hogging the "cancer spotlight".  I've read articles about people who are upset that to much money is going to prevention and not enough is being given to terminal patients.  There have been other articles that seem to pit one cancer against the other.  Stories being written about how breast cancer is ok to talk about while colon cancer is not have been popping up during this month.  Are these just good journalists taking the opportunity to "strike while the iron is hot" and write about the dark side of cancer awareness programs or is it something else?  I think it is the latter.  I think the reason for the complaining is because this is what we have learned to expect as a society.  Conflict, finger pointing and blame has become the norm.  I call it the "Reality TV Syndrome".  It seems like everything we see on TV or read in the news involves a negative spin to the story.  Now it has entered into the cancer arena.  Isn't cancer negative enough? Do we have to make it worse by creating teams that rip on one another?  Colon cancer vs Breast cancer vs Leukemia.  Research vs prevention vs terminal care.  ENOUGH ALREADY!  Nobody asked to get cancer.  It happened, now deal with it in a positive way.  There is nothing wrong with questioning why or why me,  but don't blame other cancer victims for your situation.  Don't tell your story about how you are getting ripped off because you are not getting the amount of money from fundraisers that you feel is proportionate to the severity of your cancer.  Don't complain to the news stations that your kind of cancer is not getting enough recognition.  All this conflict is great for ratings, but it is bad for the cause, finding a cure for cancer.  I watched the Packers/Colts football game last Sunday.  I was concerned that the coverage of the recent cancer diagnosis of the Colts head coach was going to be separated from the breast cancer awareness campaign.  This did not happen.  It did not turn into Leukemia vs Breast cancer, it was just cancer and everyone seemed to agree it's time to end it.  As I said before, cancer is negative all by itself.  It doesn't need to cause any more conflict than it already does.  I believe it is very important that we use all the energy, both positive and negative, to fight cancer, not each other.  If you feel the need to talk to someone because you are having a tough time may I suggest you start with God, not a reporter.  Conflict makes you bitter, prayer makes you better.  Keep praying!

Be patient.....stay positive

Sorry I haven't bloggged for a while.  It has been very difficult for me to open up and write about how I am really feeling at this time.  I have to admit that my last PET scan results took the wind out of my sails.  Hearing the doctor say that the tumor activity has increased was difficult to accept.  I have been on chemotherapy for 10 months so far.  The side effects of this treatment has not been pleasant, but I have always been able to justify the bad with the good results I have been getting.  I'm not getting these good results anymore.  For the first time I feel as if I am not winning.  I had my weekly chemo infusion and blood work today.   The numbers are heading in the wrong direction.  My platelets are lower and my tumor marker went up 2 points.  It has now been approximately 1 1/2 months that my numbers have been hovering with no improvement.  I'm getting frustrated and I'm finding it harder to stay patient and positive.  Then it hit me!  As I am writing this blog I am feeling better.  I guess I needed to get some negative feelings out of my system.  I've said it before, I know this will be a marathon and not a sprint.  I think it is time for me to get my second wind and that is what I will pray for...A strong and positive second wind.  

Mr. Consistency

I had my meeting with the oncologist today.  We reviewed my numbers from the blood work and looked at the results of the PET scan.  My numbers showed little to no movement from last week.  My platelets went down a little to 83 from 88.  A normal reading would be around 130.  My low numbers continue to be a concern and it weighs heavily on decisions made regarding treatment.  A low platelet count causes the blood not to clot as well as it should.  Thin blood and chemo do not go well together.  My tumor marker stayed the same again. It has been hovering around 19-20 for 4 weeks.  Now for the PET scan.  The scan results are reviewed by using the pictures and a very detailed report from the radiologist.  The doctor reads the report and shows us what he is referencing by pointing it out in the pictures.  Unfortunately he did have to point out a small increase in tumor activity in the liver.  He did say it was a small increase and not to get too hyper.  We just have to keep an eye on it.  I think he knows when I'm not happy with the results because after he told me about the increase he showed me my first scan and reminded me how far I have come.  It is truly amazing.  He then went on to explain what he thinks is a good course for us to take so we can get some positive results.  If you recall, my chemo infusion medication was decreased by 20% right after my finger surgery.  This was done in order to allow my system a better chance of healing.  Now that my fingers are almost healed, we decided to go back to 100% strength to see if that will move the needle.  That increase was started with today's treatment.  Coming from a sports background, I have always been told that consistency is a good thing. I think the only consistency I want now is being consistently told I'm getting better.  Keep praying!

Time for another PET scan

It has already been 6 weeks since my last scan.  I will have another scan tomorrow and I will get the results Friday before my treatment.  I always look forward to the results of the PET because it really shows the tumor involvement and how it has progressed.  The scan shows any tumor activity from my head to mid thigh.  If there are any active tumors they show up as a bright spot on the film.  I remember my first scan showed my entire liver as one huge bright spot.  It has been great to see the tumors shrink in size during the past 10 months.  The other thing we can look for is if there has been any new tumor involvement in other organs.  I will meet with my oncologist Friday and review everything we have done so far and make any changes if needed.  Even though I spend at least one day per week at the hospital dealing with my cancer, I always feel more anxious before the PET scan meeting.  I think it has to do with the fact that the scan allows me to actually see the cancer in my body.  It makes the reality of the situation really set in.  I'm looking forward to good results and I ask for your continued prayers for God's healing and also thank God for the knowledge and good decision making skills he has given my medical team.  Stay tuned.

Numbers update

 I had my usual Friday blood work and treatment yesterday.  Here is a quick update on the numbers.  My liver function numbers remain in good shape.  My platelets went up for the second week in a row, which is good news.  They registered at 88.  My tumor marker did go up, but by only one point.  I've been told that the small movement in my tumor marker, either up or down, is normal at this stage of treatment and I should not worry unless it goes up substantially.  So, Hakuna Matata everyone.  No worries.  Have a great weekend everybody!

It's in the air

When I stepped outside the past couple days, I could not help to take a deep breath and realize that summer is making way for fall. In the past this has always been an exciting time of year for me because it meant the beginning of something I really enjoy...football!  I think I have said the same thing every year, for as long as I remember, after I breath in the first cool air of the season, "Smells like football".  I did it again this year and then I took in another breath and quietly said to myself, "Thank you Lord, this smells like life".  I know there are so many things happening in our daily lives that we sometimes feel that if we stop "to smell the roses" we will miss out on what's happening next.  I've been there, lived that and I'm here now to tell you to slow down.  If you want to produce memories, you can only do that with what is happening now, you cannot form memories with future events.  My goal since my diagnosis has been to experience and enjoy events, not just get there and look for the next one.  The change of seasons has caused me to remind everyone to enjoy what's happening around you.  Even though the seasons change every year, I cannot take it for granted that I will be around to enjoy it.  Don't take for granted the events that are taking place in your lives right now.  It doesn't take long. Maybe a deep breath or a short "Thank you God" will implant the memory you might have missed. Thank you again for all the prayers and support.

If it's not broke...

Good news, my platelet count went up 20 pts to 84.  I guess the week off of the chemo pills helped.  I was concerned that my tumor marker would go up without the chemo pills, but I got good news on that front also.  My marker actually stayed the same.  So, with all this good news we decided to go back to what has been working and continue the current course of treatment, 6 chemo pills per day and a weekly chemo infusion.  This will be the plan of attack until my body tells us to stop.  I think I was the only person in the chemo suites today hoping to get the go ahead for more chemo.  I just feel we have to stay as aggressive as possible and not give the cancer a chance to grow.  I have no medical back up for that statement, it's just the way I feel.  Fortunately, I have a great medical team to make those decisions for me and so far they have always been right on.  I also found out today what kind of impact chemotherapy has on the healing process.  Believe it or not, I still have two fingers that are not healed from the surgery.  One of the drugs I am on stops the blood flow to the tumors so they will not grow.  This drug also stops the blood flow to the new tissue trying to grow in my fingers, so the healing process is very slow.  Well, I said it before and I'll say it again.  As I get closer to beating this thing, I not only have to pray for healing, but I have to pray for patience as well. Keep praying with me and have a great weekend!

New treatment course??

I go in today for my weekly treatment.  Based on my numbers I may be put on a new course of treatment.  If you recall, I was taken off my chemo pills for 1 week in order to give my body a chance to get my platelet count up.  Hopefully this did the trick.  If this did not work we may take a longer rest or change drugs or ????.  I put my trust in the knowledge the Lord has given my medical team. I'll update later today.

New numbers...New course

I had treatment yesterday as per my usual Friday Schedule.  The only difference was I went at 8 in the morning as opposed to my normal 12 noon because I attended the wedding of Ali's (Sam's girlfriend) brother at 3pm . It was a beautiful event and it felt good to dress up and have a date with Vic.
Back to the numbers.  My liver function is still good.  The problems I ran into this week had to do with my platelets again.  For some reason they went way down to 64.  This coupled with the fact that my tumor marker stayed the same again has prompted the doctor to change my course of treatment.  He feels the best plan for now would be for me to stop taking my chemo pills for 1 week in order to give my body a break.  I will still be receiving my weekly chemo infusion.  Hopefully this will get the numbers back to moving in the right direction.  I pray everyday for God's healing touch and now I find I have to also pray for patience.  It has become increasingly difficult for me to accept any setbacks.  Vic has to remind me every step of the way that I knew this would be a long journey from the very beginning and to remember how far I have come.  I know she is right and I appreciate her understanding and patience with me.  Keep praying and thinking good positive thoughts, it helps us all.

Go east my girls

Well, the girls are gone. They headed back home to Baltimore.  Allison, Lillian and Caroline took a special passenger with them... Nana.  That's right, the four of them drove back to Maryland, non stop I might add.  It took them about thirteen hours and they all made it back safe and sound.  Vic will fly back Thursday night after helping Allison with some finishing touches on the nursery, attending Lillian's first soccer practice and seeing Lillian off to her first day of school.  It was wonderful having the girls here.  Just think, in four short months I'll have to start saying the girls and my boy.  I can't wait.  There was a time when I was not sure I would be here to experience the birth of my grandson but, God has continued to bless me with good results from my treatments.  At this point, I feel that time is my ally and not my enemy.  That being said, I will never take for granted the time I am able to spend with my grand children or the rest of my family.  This past week has not only filled my memory banks, it has filled my heart with the love that only a grandchild can give.  I miss them already.  Thank you Lord for allowing me this time.

Great week

Having the girls here this week has been great. (I include Allison in on the "girls")  We've been to the zoo, had a sleep over, celebrated Lillian's 4th birthday, gone swimming twice and we still have the rest of the week.  I had an appointment with my LP nurse today and she asked me how my fatigue level was.  I thought for  a bit. I should be very tired, but I'm not.  Doing these things with the girls actually energizes me.  I can't help it, but every time I do something with those girls I pray that it is not the last time I'll be able to do it.  This gives me the energy to keep going.  Now, I'm not saying that after the day is done that I am not tired, of course I am.  It's like the runner who keeps running as fast as he can and collapses after crossing the finish line.  There will be plenty of time for me to rest when the race is over.  For now,  I will do anything my grand daughters want to do.  I love it!!

I did have blood work today along with my consultation.  I seem to be in a holding pattern with almost everything.  My liver function is good, my platelets are still low and my tumor marker went down by only 1 point.  Again the good news is that nothing went the wrong way.  I'm constantly reminded that no movement is better than bad movement.  I will be getting my chemo infusion tomorrow and after I get home from the hospital I will enjoy another great night.  You know why?

Lillian and Caroline will be coming over for dinner and stay the night.  I'm looking forward to playing make believe, maybe building a fort with blankets, reading stories and just snuggling.  Again, thank you Lord for these moments and I pray for many more.

New numbers, old numbers

I had a good day at the hospital yesterday, everything went well.  My numbers came back with no real changes.  My platelet count stayed about the same at 78.  My liver function numbers were all unchanged.  My calcium was the only number that showed low, but not a problem.  My tumor marker also stayed where it was last week at 21.  As the nurse said, "Your numbers stayed the same, which is better than them going in the wrong direction."  So, I got that going for me.  Have a great weekend everyone!

August 2012 home stretch

The busy month of August is coming to a close, but not without a flurry of activity.  As usual, I will be going to the hospital for treatment today.  I will post my numbers later as I get them.  What else?  As I am writing this blog, Sammy is at the oral surgeon having his wisdom teeth removed.  Based on my own experience, Sam will need some TLC during his recuperation.  I will be making him a variety of food that is easy to swallow with minimum chewing involved.  I'll be glad to take care of someone, as opposed to having them take care of me.  But, that is not what will keep me busy for the rest of the month.  I'm so happy to say, Allison and the girls are here!!  They came in last night and spent some time with us before going to Allison's parents.  We have a full schedule planned with the girls.  We will be going to the zoo, swimming at great grandma and great grandpa's pool, celebrating Lillian's 4th birthday (Aug 27th) and just general goofing around. Having these girls around me, giving me hugs and kisses, is the best medicine I could ever have.  I just love having them here!  Please say a prayer for Sam's recovery and continue to pray for me.  Lillian asked me if her prayers are working.  Just by being here and being able to answer her question is proof that the power of prayer is real and working in our lives.  Thank you all and God bless.

8-22-82

It was the title placed on a picture from a Polaroid Land Camera, 8-22-82.  The picture was of my 1st born son Matthew and it was prominently displayed on my desk at work.  Hard to believe that was 30 years ago today.  That's right, it is Matt's birthday today and he is 30.  I remember the pride I felt when he was born and that feeling of pride has never gone away.  Matt has been the son everyone would love to have.  He was always a good student.  He was always a great athlete.  But, the thing that I feel the most pride about is that Matt is a great person.  He has always been kind and caring and 30 years later he is still the same.  He has shown me that he is a wonderful father to my grandchildren and a good husband to my daughter in law.  The one thing I have learned over the past 9 months is that out of everything you have in life, the love of your family is the only thing you can count on to be there forever.  I know Matt believes this and it is this attitude that makes Matt the best father and husband he can be.  It's been a great 30 years and I ask everyone to join in and wish Matt a Happy Birthday and say a prayer for him and his family's continued happiness.

Numbers update

Just a quick update on my numbers from Friday.  Things are going well.  My liver function numbers are good.  My platelet count is low again at 70 but, that is normal for me.  My tumor marker did come down again to 20 from 27.  All things considered, my energy level is good and I'm taking advantage of this by staying very active.  Everything seems to be working, so we will continue with the current treatment......good medicine and lots of prayer.

Great month so far....more to come

Wow, this has been a great month so far. August has always been a busy month for our family because of everything that's going on.  This year I have really been looking forward to enjoying August more than ever, due to the fact I was told I may not be here.  Well, by the grace of God, I'm still here and I'm feeling good enough to participate.  What has happened so far?  I've been cleared to re-start my chemo treatment and it's going well.  I was able to walk and eat my way through State Fair.  I spent a day at the lakefront watching the Milwaukee Air Show.  I got out on the golf course and shot pretty well. I celebrated Vic's birthday.  We finally got rain and I was able to cut my grass.  These are the things I've done so far this month and it is only half over.  What's coming up?  Zoo Ala Carte starts today and I will be going to that.  There are more birthdays to celebrate,  Matt's 30th and Lillian's 4th.  Allison and the girls are coming to visit and this will include birthday parties, zoo visits and anything else the girls want to do. (Because PaPa said so.)  The best part of this is that everything I am doing has included my family. Not only my wife and kids but brother and sister in laws, nieces and nephews, grandchildren and more.  It is definitely not the event as much as it is who you are sharing the event with that makes it  special.  I have two choices, feel sorry for myself and withdraw from everything or have some fun and enjoy what I have left.  My family allows me to put aside my illness and have fun.  So, for the second half of this month I challenge all of you to put aside your problems and have some fun with your family.  I know I will.  Keep praying everyday.  

Happy Birthday Vic

What a perfect event to kick off my newly named blog, the celebration of my wife's birthday.  I have been truly blessed to have Vic in my life.  She has always been a great wife and a devout mother to the boys, but my illness has allowed her true colors to come through.  When I was diagnosed with cancer in November, not only did my life change but, Vic's life was turned upside down also.  She has been by my side every step of the way.  She has been with me for every doctor and hospital visit plus she is still working full time.  I know this whole thing has been very overwhelming for her and I just want her to know that I would not be here if it was not for her.  She has given me the strength to keep going and I cannot thank her enough for everything she does for me.  Of all the blessings God has given me, having Vic as my wife and best friend is on the top of the list.  Vic, I thank you for everything you do and I love you very much!  Have a great birthday and let's plan on celebrating many more together.

BLOG NAME CHANGE REMINDER

Just a reminder, the name of my blog has changed.  I'm sorry for any inconvenience this may have caused, but I needed a name for this blog to accurately portray how I feel.

Still here

I'm sorry I have not posted since last Friday.  I guess I was living up to the name I had on this blog "writers block".  I really had nothing to report.  It  seems like sometimes everything just stays the same, no ups or downs.  I was having a hard time coming up with something interesting, I was truly having writers block.  Every time I would open this site to write something, I would look at the title and my mind would go blank.  So what I did was change the name of the blog to something that really describes how I feel.  I changed the name to "Blessed".  Now, when I look at the title, I know why I'm writing this blog.  It's not just for me.  It's not just to give numbers.  This blog is my proof, to everyone who reads it, that even in the most dire circumstances God's blessings are all around us.  I use the term "us" because I've also come to the realization that it is not just me who is affected by cancer.  I may possess the physical signs of the disease but, all of you are affected in one way or another due to my illness.  I want this blog to be a source of inspiration, as well as information, to all who read it.  This battle cannot be won without God's help and the support of all you, so keep praying and count your blessings everyday.

I did have blood work and treatment today. The numbers are looking good.  My platelet count has gone back to being low again, but it is normal for me during chemo.  The good news is the tumor marker number went down to 28 from 41.  Everything seems to be going in the right direction.  For those who are keeping score, yes my face rash went away when I was off chemo and yes it is back, but not as bad as it was the first time.  That's a blessing.

Scan results

I met with the oncologist today and we reviewed my latest PET scan and blood work.  First the blood work numbers.  All of my liver function numbers look good.  My liver is doing what it is supposed to do with very little problems being caused by the tumors.  My platelet count stayed at a high level for me with a count of 110 and the all important tumor marker number came down to 47 from 63.
The results of the PET scan did show some increased tumor activity but we expected some increase due to the fact I was off treatment for 4 weeks.  The doctor did admit that we lost some ground but he feels we should be back on track now.  I have to watch my fingers very closely for any infection.  If I can go a while with no infection we will increase the Erbitux dose back to 100%.
I feel good because the doctor said we should set up our next scan for the usual 6 weeks out.  Anytime a cancer patient hears the doctor setting things up for 6 weeks out, it gives you a good feeling about what's happening.  Thanks for all the support, I could not do this without all of you.  

Important next two days

It  has already been 6 weeks since my last PET scan.  I am scheduled for another one tomorrow.  Just as a re cap, this scan shows the tumor activity.  I am infused with a radioactive solution that makes the tumors light up on the scan.  The brighter the tumor the more active it is.  My last scan was very promising because the bright spots were very scattered and much smaller than in the past.  In my first PET scan my entire liver was one big bright spot.  It really shows how well the treatment has been working.  I will meet with the oncologist to review the scan on Friday morning and discuss how my treatment will be handled in the future.  This is always a big appointment for me because it gives an actual visual account of what is truly going on with my cancer.  I'll let you know the results.  Keep praying.

Friday's numbers

I had treatment yesterday and all went well.  My liver function numbers are about the same as they have been, high side of normal.  I was really happy with my platelet numbers as they were 119 which is the highest they have been in quite a while.  It was kind of funny for Vic and I when the nurse got my numbers.  This is the first time I had this nurse handle my infusion.  She normally works at Froedert full time and comes to Waukesha once a month.  She was very concerned with my platelet count being so low and questioned whether I should get treatment.  We laughed and told her that I have had treatment when my count was in the 60's and not to worry, 119 is very high for me.  She looked at my history, shook her head and said ok.  Next we asked for my tumor marker number.  She said she would get it to me as soon as the lab got the results.  A short while later she came into the room looking very nervous.  She handed me the lab readout and walked out of the room without saying a word.  The tumor marker number was too high for her to discuss it with us, or so she thought.  It was 60 and Vic and I were very happy.  I think she checked my history again and understood our reaction.  I'm doing good and happy to be back on track.

Looking back

I went to my blog today in order to update my progress.  I realized as I started typing that I really don't have much to report.  My chemo treatment has resumed and I feel the same as I have in the past during treatment, a little more tired and fatigued than usual.  I will have blood work done on Friday in order to see if the treatment is knocking down the tumor activity that started up again while I was off chemo.  Other than that, I have nothing else to write about..... or so I thought.

The site I use for my blog has a statistics page.  It allows me to track the number of views and the location of where the views are taking place.  I was very surprised when I looked at this info.  There has been over 21,000 views to the blog from 10 different countries around the world.  I had to do something I had not done since the blog was started.  I went back and read my entries from the beginning.  This is what I realized.
It has been 8 months since my diagnosis.  Sometimes it seems like such a long time ago and other times it seems like yesterday.  I was not given a very good prognosis based on the scans and blood work presented to the doctors.  The best case scenario was 2 months, but the doctor said he would be as aggressive as possible and he was.  As I read the blog entries, I am reliving the feeling of hope as each treatment showed promise.  My faith in the Lord and the outpouring of prayer was evident in each post.  I also took notice in the way I began to see how important it is to enjoy what you have in your life.  We  all to often are looking into the future for happiness and missing the happiness we have in our life right now.  The events I have experienced since my diagnosis mean much more to me now because these were events I was supposed to miss.  Each blog entry is a testament to the miracle of healing.  It also reminds me how important my family has been over these last 8 months.  The difficulty of handling the unknown while having their lives turned upside down is harder than you could ever know.  Suddenly, I was the one who needed all the attention.  They have done everything I needed without fail.
While I was reading my blog I also read the comments made by the followers.  The feeling of love, hope and prayer is evident in all of the comments.  I did come to the realization that this blog is not mine, it's ours.  Every prayer and every positive thought is helpful in my recovery.  Keep them coming and we can review again in another 8 months.

Finally, back on the juice.

I had blood work done yesterday and based on the results the doctor feels I should be ok to resume chemo treatment right away.  There was a mixed bag of factors that went into his decision.  My finger infection looks like it is under control. My platelet count is in the upper 90's, which is as high as it has been in months.  My liver function numbers  and tumor marker number are going up which indicates that there is increased tumor activity.  Based on all this, we are going to resume treatment today.
There will be a slight change in the regiment of chemo meds I will be on.  We are going to continue taking the Xeloda pills, six per day, at the same dosage as before.  We will also stay on the drug Erbitux because of the good results we have experienced with tumor reduction.  The dosage however will be reduced by 20%.  Hopefully this reduction will slow the major side effects I was getting from this drug such as skin rash, finger infections and joint weakness/pain. We will be watching this very closely and make changes early on if problems occur.  I do know one thing for sure, we will stay as aggressive as possible in both treatment and faith in the Lord's healing power.  It feels good to get back on the offensive in this battle.  Keep praying!

Stiches are finally out

I got the stitches removed yesterday and boy does it feel good.  The doctor was happy with the results from the medication to knock down the infection.  There is some infection still remaining but it looks like it is on the way out.  I go to the hospital tomorrow for blood work.  If everything looks good I should be able to start up treatment again on Friday. This is very important because I am experiencing some of the symptoms I had experienced before when the tumors were growing.  I really feel I need to get back on the offensive and attack the cancer with what was working before the infections.
Thanks for the prayers and please keep them coming.

Quick update

My fingers are slowly getting better.  I got a call from the surgeon Tuesday night and he told me they found something in the cultures they did during my surgery.  I have a fungal infection as well as a bacterial infection.  The antibiotics I've been on were strictly for the bacterial infection so they are now putting me on an anti fungal.  Both my surgeon and oncologist feel this should solve the infection problem and my stitches should still come out as scheduled next Tuesday.

In regards to my mother in law's broken elbow, she came through the surgery fine.  She has some hardware in her arm now and the recovery is going to be rough.  Please keep the prayers coming.

A few things going on.

I have a couple things regarding me to report first.  I do not have any treatment or blood work this week.  It has been a long time since I had a full week off from the oncology wing.  It really seems weird but, I should start up again next week.  I went to the surgeon's office today for a follow up on my fingers and toe.  I have to leave the stitches in until next Tuesday.  The infection is still there so they hope the antibiotics will do their job this week.
I need some prayer help for Vic's mom, Barb.  She took a nasty fall and broke her elbow today.  She is scheduled for surgery tomorrow afternoon.  Please send your prayers and positive thoughts that she has a successful surgery and a quick healing process.

More time off

I went to the hospital yesterday for blood work.  The LP nurse also wanted to see my surgery wounds in order to decide on my future treatment plan. After looking at my fingers it was decided that the best course of action was to let the fingers heal first.  The doctor feels the chemo drugs will inhibit the healing process.  Unfortunately, my tumor marker number has gone up while I've been off.  This means there is some tumor activity but, the doctor feels the lessor of two evils is to let the fingers heal.  Once that is done we will get back on track with the chemo and start attacking the tumors again.  I do go to the surgeon on Monday for the removal of the stitches.  One week after that we should be ready to go.

Now for the best news of the day.  Ever since I was diagnosed, I have really looked forward to certain events.  These included holidays, special events and birthdays.  I am pleased to announced that I've made it to be around for another special birthday.  On this day 30 years ago, my daughter in law Allison was born.  Not only is she the love of my son's life and the mother of my beautiful granddaughters, she is as much of a daughter to me as there could be.  I'm so happy she is part of our lives and I wish her the best on her special day. I pray I can share many more in the future.  Love You! Happy Birthday!!!

Happy Fourth of July 2012

It's been an excellent holiday.  I was able to go to the lakefront fireworks and they were great.  I can't thank everyone enough who helped me be as comfortable as possible.  It was very hot and my fingers and toe were throbbing after the long walk to the park but, it was worth it.  Then came the traditional 4th celebration at Mom and Pop's today.  Again it was very, very hot and the food preparation in the kitchen made it even hotter.  Most people were able to find relief in the pool.  Unfortunately, my recent surgery did not allow me to get wet.  Even with that, I had a really good time.  It is all about being together with people you care about.  That is what makes everything worth while for me.  That is what keeps me looking forward to the next event.  Family, friends and fun.  Thanks for everything!!

Surgery Complete

My surgery is over and I hve large bandsgds on my finhers.

Just kidding, I am having a little problem typing but I do have two fingers available.
The surgery was successful according to the doctor.  I still have some anesthesia in my system so the pain is not bad right now. I do have some pain meds and I have been told I will need them.  This should heal in about ten days.  He also did one of my big toes so the walking thing is a bit of a pain, literally.  I do plan on going to the downtown fireworks tomorrow.  If I can , I will be there.
Thanks for the prayers and good thoughts it is always appreciated.

Did I mention my new Dr is a surgeon?

I had my appointment today with my new doctor and the outcome was not the best news.  I am scheduled for finger and toe surgery on Monday.  I had hoped to resolve this finger and toe infection with some different meds but to no avail.  The surgery will involve cleaning out the infected tissue and removal of part of the nails on 4 fingers and 1 toe.  This will allow the antibiotics to do their job more efficiently and hopefully put an end to this problem.  I wonder if this new doctor realizes that he is now going to be part of the "miracle medical team" that God has assembled to cure me?   I'll tell him after the surgery so he doesn't get nervous.

Another Doctor to See

I had an interesting day today at the hospital.  My blood work came back with good news.  My tumor marker has not changed during my time off of treatment.  It has held to 15.  All of the other numbers are pretty much the same with the exception of my platelets.  For some odd reason they went down during my time off.  My doctor doesn't know why my platelets seem to do the opposite of what they should, he just shakes his head because this is how it has been since day one.  The big question was my finger infections.  The answer to that question is.........No treatment again!  The infections have gotten bad enough that they want me to see a different doctor who specializes in infections.  I will see him tomorrow.  Hopefully he will have some answers and treatments to get this under control.  While I do want to start treatment again, I really need to get these infections under control.  I am slowly losing the use of my hands because of the pain in my fingertips.  You just do not realize how often you hit your fingertips on things.  Reaching into the silverware, holding a towel after a shower, buttoning a shirt, petting the dog and so many more activities I have always taken for granted.  I have to type this blog with the only two fingers that don't hurt.  It has been said, "You don't know what will kill you first, the cancer or the treatment".  I know the only way I will be able to get through this is with prayer and patience.  I'll let you know what happens tomorrow.

New Chapter

I have to consider myself very lucky.  I have been going through treatment for 6 months and I have not really experienced any of the "bad" side effects, until now.  I've heard of so many people who had to quit treatment or have it altered after a couple sessions because they could not handle the side effects.  I know the good results I have had so far is a direct result of uninterrupted treatment at a high level of potency.  Now things have changed and I must be patient with the direction my story is taking.
I finally started to experience some of the bad side effects from the chemo.  I've talked about the infections in my fingernails and the loss of feeling in my hands and feet.  Unfortunately, these problems are getting worse. The nail infections are starting to show up in my toenails now and they are not getting better on my fingers.  They are also extremely painful to the touch.  I have been taking a stronger antibiotic for 4 days now.  Hopefully it will start working soon.  The loss of feeling in my hands and feet are a direct result of the chemo pill I am taking.  This side effect was supposed to happen months ago.  Thankfully it has taken this long to manifest itself.  The timing for my trip out to Matt and Allison's was very good because the joints in my left hand have become very stiff.  I don't think I would be able to hold a golf club right now. Just a note; if I was not able to hold a golf club properly while I was golfing with Matt and Sam last week, I would not have been able to birdie the last hole.  Just Sayin.
As a direct result of these side effects the doctor has suspended all treatment until I get better.  This has actually been difficult for me because the treatment has been working so well and I want to keep it going.  I have had more discomfort with the side effects of the medications than I have had with the cancer itself.  I just have to realize that what people, including my nurses, have been saying is true.  I have had a miraculous run so far and I should not let this setback get to me.  I have put my faith in the Lord and his plan for my outcome.  I can't stop now.  I now pray for patience as well as healing for all my ailments.  I do go back to the hospital for tests on Thursday and I will accept whatever they feel is best.  After all, this is a marathon, not a sprint and for those of you who know me well, you are all very happy it is not a sprint.  (I'm not very fast.)  Keep Praying!

Another week off

After a visit with my nurse practitioner, I was told they were going to suspend my treatment for another week.  The infections in my fingernails have not responded very well to the antibiotics they had given me last week and they do not want them to get worse.  I was prescribed a different and stronger medication to now take for one week.  My next appointment is for Thursday and we will do another evaluation of the infections and a full blood work up.  I'm curious to see how I feel with 2 full weeks of  no chemo drugs.  I hope this will be a good rest for my body but, I also don't want to back off what's been working so well.  I am finding out as we get closer to beating this cancer, that it is a balancing act between the treatment and what the treatment is doing to me.  I have to rely on my faith in God and the medical team in order to get to the desired results.

Back to reality

Sam and I got back home last night from our trip to Baltimore.  We both had a great time with Matt, Allison and the girls.  I want to thank Matt and Al for everything they did for us while we were out there.  I have not had the opportunity to spend time with both of my boys together.  While Matt was playing football, Sammy was playing basketball so our schedules never seemed to match.  This was a special time for me and we took full advantage of it.  I was able to play golf with the boys twice and Sam and Matt played three times.  As an added bonus, we all played very well.  I will admit, playing 18 holes of golf was physically demanding for me but, at the same time it was emotionally and spiritually uplifting.  To be able to see Matt and Sam finally spending time together as brothers filled my heart with joy and I thanked God for allowing me to be here to enjoy it.
I also thank God for the time I was able to spend with my grand daughters.  Lillian and Caroline are truly my angels.  No matter how bad I may feel, they are able to "make me all better".  Every day I was awakened by a very loud "Good Morning!" followed by the girls climbing into the bed.  We then watched cartoons until breakfast was ready.  I can't think of a better way to start my day.  I just soaked in the time with the girls. We didn't have to do anything major, as a matter of fact, it was the little things we did together that I enjoyed the most.  Watching movies, playing make believe, running in the sprinkler, arts and crafts, hide and seek, reading books and anything else that made us laugh was our daily ritual.  I am often asked, "What keeps you so positive as you fight this cancer?".  Read the previous few sentences and you will have my answer.  I want to be here for a long time so I can enjoy as much time as possible with my grand children, current and future, they are the light of my life.
Last but not least, I want to thank Allison.  She is always willing to open her home to us when we want to come out to visit.  I realize that having people come out to visit creates additional burdens and she is always willing to take them on with no problems at all.  I also want to thank her for her relentless support regarding my illness.  We all know she is the most positive driving force I have on my team.
Now, it's back to reality.  Today I have blood work and consultation.  My finger infections are getting worse and I may have to skip treatment again.  Hopefully I can get this under control and get back on track with full treatment.  Thanks for the prayers and support.

Having fun out east

Like I said in my last post, I was going to busy.  I'll get everyone caught up on what's been happening.  My doctor appointment went both good and bad.  The good was that my tumor marker went down again to 15 from 19.  The bad was that my finger infections are getting worse and it caused the doctor to cancel my treatment for the week.  A bad infection would not be easy to fight due to my compromised immune system, so we have to get this under control before we continue treatment.  I've been put on more antibiotics, yaaaaay! more pills!
I am writing this blog from the comfort of Matt and Allison's home in Baltimore.  Sammy and I drove out and got here on Saturday.  Sam did a great job driving the whole way.
On Fathers Day I enjoyed a round of golf with my boys compliments of Matt.  We all had a great time. I was able to play all 18 holes which was a goal of mine before we went out.
Today it is raining a little so it's "Arts and Crafts day" with the girls.  Sam's teaching abilities have been very helpful.  The girls have been a blast to be with.  Both of them are so smart and beautiful.  Speaking of beautiful, Allison has been a wonderful hostess and she is just glowing.
We have a lot more planned for rest of the trip.  More golf, shopping, swim lessons, reading stories, watching movies and more.  I love the opportunity to be with them all.
I realize this trip was set up to be a "boys only" get together and it has been great but, I know the girls miss seeing their Nana and I miss having her with me.  See you soon honey!
I'll update more when I get home.  Keep praying!

Busy rest of week

It's going to be a busy next couple of days.  Wednesday I go into the hospital for a PET scan.  This scan will be very important because it will show if my lower tumor marker numbers are actually telling the real story, the tumors are not active.  I go back in on Friday morning for a full day.  I have blood work first, then I have a consultation with the doctor.  During the consult he will review the PET scan results with us.  Unfortunately,  I have to tell him about the fact that I am losing feeling in my fingers and feet.  This is a common side effect from the chemo pills I am taking.  I've been very lucky up to this point because this side effect usually happens very soon after first taking this drug.  I've been on this drug for six months at a very high dose with no problem until now.  Hopefully all he might do is lower the dose.  I don't want to change what's been working if I don't have to.  Finally,  after all that,  I go to the "Chemo Suites" for another treatment.  That seems like enough for one day but that's not all.  After my treatment, Sam and I are driving out to visit Matt, Allison and the girls in Baltimore.  We are taking Matt's car that he left in WI and flying back next week.  I had to make this trip now because we are planning on golfing and I do not know if I will be able to hold a golf club in the next couple of weeks.  So, that's how I am going to spend the rest of my week.  I'm going to bed and get some rest!

Todays treatment

I had my treatment today and all went well.  Besides my usual chemo partner Vicki, I was happy to have Sam join me today.  This gave Sam an opportunity to see what is all entailed for me during a day of treatment.  The nurses were all very informative, explaining to Sam what they were doing and why they were doing it.  I'm glad he was able to spend the day with me.
I did get a set of numbers this round and they were all good.  My liver function numbers were pretty much unchanged and still show me to be in the high side of normal.  My tumor marker continues to go down.  It came in today at 19.  The nurse who administered my infusion today has never treated me before.  When she gave us the tumor marker number, she seemed to be surprised how happy we were with a number of 19.  Vic noticed and told her that my number was 3000 when I was first diagnosed.  After that info she was just as happy as we were.
There have been a couple other instances recently of people seeing the healing work of the Lord.  Today the hospital Chaplin stopped in during my treatment and asked how everything is going.  I told him all was going well and he placed his hand on my knee and said "God Bless You".  He went on to tell us that his wife had cancer and she was now going on her 6th year cancer free.  He gave credit to prayer, miracles and medicine.  He wanted to make certain we knew he gave credit in that order and told us to keep believing.  The other instance showed me how blessed I am to still be here.  I had not seen the surgeon who performed my surgery since December.  He was the first one to show me the CT scan of my liver and explain just how bad the tumor involvement was, so he was very aware of my situation.  A couple of weeks after my surgery he installed my medi-port for chemo transfusions.  His last words to Vic were "Why does this have to happen to the good  guys?"  Fast forward to last Friday.  Vic and I ran into the doctor at the hospital in the hallway.  I was very impressed that he remembered me by my first name.  I was also very certain that he looked like he was seeing a ghost.  He did not think I was going to make it for very long after surgery.  He was not alone and based on the numbers and the scans other doctors and nurses felt the same.  Prayer, Miracles and Medicine, in that order, has allowed me to continue my life on this earth and I continue to thank God everyday for his blessings.

It's been awhile

I really have had nothing to report over the last week.  Since I have been on a weekly treatment schedule I have not been required to see the doctor or the nurse every week.  This has resulted in not getting numbers every week.  This week has been one of those quiet weeks  I do feel good.  There has been no change in the side effects I am experiencing and I am doing ok with them. I do go in for treatment tomorrow and I hope to get a set of numbers.  I'll keep you informed.

Yesterday's treatment info

I had my weekly treatment yesterday and all went well.  Unfortunately, I have been experiencing a few more side effects from the chemo drugs.  The new side effects now include very painful infections in my nail beds around my fingers.  I have to take antibiotics and soak my fingers twice a day in order to heal them up.  I also have to put bandages on my finger tips everyday.  Buy stock in the Band Aid company, I think I am using them all up.  This problem is from the Erbitux, the same drug that causes my rash.  The other problem I am having is caused by the drug I have been taking since day one, Xeloda.  This drug has been building up in my system and my body is not handling it as well as it has in the past.  This has caused what is called neuropathy, the loss of feeling in my finger tips and feet.  It feels like my fingers and feet are semi asleep.  I have a mild case at this point but, it will get worse as treatments continue. The only way to stop this is to stop the drugs.  I am not willing to do this because the combination of the drugs I am taking seems to be working well.  That is the good news.  My numbers are really good.  My platelets are at 90 (higher than they have been for a long time), my bilirubin is at 1.3 (at the high side of normal) and most important my tumor count went down to 26 ( normal being 0-2, but I was at 3000 at the beginning). I pray everyday for this trend to continue and I ask everyone to do the same.  Thanks again for all the support, it has not been in vain.

Memorial Day Weekend 2012

I decided to post after the weekend was over so I could cover all that happened.  I'll start with Friday.  I had another treatment and all went normal.  I was very pleased with the results of my blood work.  My platelet count went up to 93, which is the highest it has been in a long time.  My tumor marker is down to 42 and my liver function is good.  So far this is telling us that the tumors are becoming less active.  This is  just what we want.
Saturday was moving day for Sammy.  We had to move Sam out of his apartment in Kenosha and bring his stuff home.  The nurse told me specifically not to do anything, other than direct the move, because of my "fragile" state after my treatment.  How could I not listen to that tremendous advice?  In order to make the move as efficient as possible, I had to make the call to the pros......Three Duesings and a Truck.  That's right, Bob, Donna and Kyle were lifesavers and we thank them for all their help.
Sunday was a very relaxing day.  The only real hard labor we did was when Sam and I did a little lumberjack work, nothing major, just some branches that needed to be removed.  It was very hot so we decided to spend the afternoon at Nana and Grandpa's pool.  I have to be very careful in the sun so I just sat under the umbrella and did not swim.  It was nice to relax.
Monday was another day at the pool, along with a nice meal.  It was very warm again so I had to watch myself so I did not overheat.  I really enjoyed spending time with the family on Memorial Day.  When I was working I usually spent this holiday at work.
Overall it was a really great weekend and I look forward to many more.

Still here

Sorry I have not posted for awhile but I've actually been busy living life.  I can tell you that I have been doing well.  The weekly treatments cause me to be a little more tired than before but it is to be expected since my body does not have a time to heal.  With that said, I would like to tell you what I've been up to.  The weather has been so wonderful that I thought it would be great to work outside in the garden.  Lucky for me Sam was home all weekend and really helped me a lot, especially with the heavy lifting.  Vic was my driver and spent more time at the garden supply stores than I'm sure she wanted to but, as time went on she also got into it.  We have beautiful flowers all over the back patio as well as the front gardens.  Vic also decided to plant a salsa garden with tomatoes, peppers and herbs.  I also did something I've wanted to do for a long time.  I made a beef brisket in the smoker.  This large piece of meat took over 6 hrs to cook. I watched TV shows on how to do it and I read many different recipes.  It scared me to realize that it either works and you get a great piece of meat or it doesn't and you get a large piece of leather.  Well, I'm pleased to announce it worked and the meat was great.  I spent hours just sitting out on the patio with Ramzi.  This dog cannot be tired out.  I had him running for an entire afternoon and he still wanted more.  It's wonderful to have him home with me.  He keeps me company and he is never in a bad mood.  If I need some positive energy he is always willing to supply it.  I also was able to cut and trim the grass.  This has always been my obsession, "The Yard".  I have 1 acre to take care of so it does take some time to do it right.  Now it takes me a lot longer.  I have to watch out for too much sun exposure and just getting too tired.  My rest time is a mandatory rule set by Vic in order for me to be allowed to do this.  At first I thought she was being too cautious but,  now I realize she was right.  There is no reason to rush.  I just enjoy the opportunity to be able to do it.
Today I go back to the hospital for  blood work and consultation.  If that goes well, I will go back tomorrow for treatment.
I thank God for the chance to be able to do the things I have done this week.  I have spent some great time with the ones I love.  The flowers we planted are a constant reminder to me that life is both beautiful and fragile.  I have to take care of the flowers on a daily basis in order for them to bloom to their potential, if I don't they will wither and die.  I use this as a life lesson.  God wants us to make certain we bloom to our potential.  Don't allow your spiritual self to wither and die.  Pray every day and thank God for all of your blessings.  This will allow you to live life as a beautiful bloom for all to see and enjoy.

Good numbers again this week

My numbers this week were very good again.  My liver function is about the same as it has been over the past few weeks, on the high side of normal.  My bilirubin count is a little higher than they want it at 1.4.  They would like to see under 1 but, with weekly treatment they think it will be tough to get it down.  My platelet count is still the only problem as it continues to be low.  My count was 74 which caused the Pharmacist to halt my treatment.  My doctor had to call him and convince him that I could handle the treatment, which he did and I received the infusion.  Now, for the great news, my tumor marker went down to 54 from 191.  This is a sure sign that the combination of meds I am currently taking is working to stop the growth of the tumors.  Thanks again for all the prayers and good thoughts.

32 of my highlights with Vic

In 32 years of marriage I have many highlights.  In honor of our 32 anniversary, here are 32 of them.

1. Our wedding
2. 1st apartment
3. Mr C
4. Pregnant
5. Matthew Charles is born
6. Pregnant again
7. Andrew Lawrence is born
8. Andrew goes to Jesus
9. Brutus
10. Matt youth basketball
11. Matt youth football
12. Pregnant again
13. Samuel Lawrence is born
14. Brutus goes to be with Andrew
15. Sam youth basketball
16. Sam youth football
17. Titan
18. Matt high school
19. Matt college
20. Badger football
21. Sam high school
22. Allison Faye
23. NFL football
24. Ali K
25. #1 grandchild Lillian
26. Sam college
27. UW Parkside basketball
28. #2 grandchild Caroline
29. My cancer diagnosis
30. My great Family
31. The power of prayer
32. Everyday I'm here to enjoy all the above!

I look forward to adding to this list next year.  Keep praying and thanks for all the positive support.

On this day, 32 years ago.........

On this day, 32 years ago, I made Vicki Lee Duesing my wife.  As husband and wife we have stayed together through the highest of highs and the lowest of lows.  The key word to the previous sentence is "together".  It's easy to handle the highs or the good things in a marriage.  It's the way the lows or the bad things are handled that can cause a marriage to fail.  When I said "I will" to the "for better or worse, til death due us part",  I was serious and so was Vic. We have done everything together.  We have laughed together and cried together. We have not always agreed on everything, but together we have been able to overcome our differences.  When I tell people that I've been married for over 30 years I always get a "Wow, that's long".  If I would tell someone that I've been friends with someone for over 30 years I would hear "Wow, that's cool".  There is the answer to a long marriage, make certain your spouse is your best friend and treat them as such.  Share everything with them, good or bad.  Be a shoulder to cry on when needed and be willing to laugh at the humor life gives us.  Pray together. Pray for each other and  thank God every day for what you've been blessed with.  That's my recipe, try it out.