Sunday, April 29, 2012

A couple days into round 8

So far round 8 has been pretty normal.  I feel like I have felt with all the other treatments, a little tired and fatigued.  The only real difference is the frequency of the infusions with the new medication being injected every week as opposed to every 3 weeks with the old stuff.  Oh yeah, the other difference would be the "rash".  I promised myself that I would not obsess about the rash because of the excellent results the medication had shown after the first treatment.  After all, with the exception of the severe burning and itching, it is really more of a vanity issue than anything.  As a matter of fact, I'm reminded on a daily basis that how I look is all in the eyes of the beholder.  My neighbor said I look fine, just a little burned.  My nurse, when asked if the rash will get worse with each treatment, turned to me and said, "Do you think it can get much worse?" And then there is Vic, who lovingly tells me everyday that it looks better and to hang in there.  Now, the medications I was given to ease the symptoms of the rash are slowly showing some promise.  This made me feel good until I was told that when I take this medicine I have to stay out of the sun.  The nurse actually told me it would be best if I just stayed indoors during the day.  It's hard enough to battle cancer as a human, but now they want me to do it as a vampire!
Whew, I feel better now.  I guess I just needed to vent a little.  I know the rash has been clinically proven to be a sign that the medication is working.  My last numbers proved that point.  I also went back and read one of my old posts that dealt with understanding God's will.  I know we do not realize why certain things happen now but, we will.  God will always make clear to us why things have happened when we are ready to accept it.  It may not be immediate, as a matter of fact, it may not be while we are on this earth.   I don't think there is anything wrong with questioning or complaining once in awhile.  After all it is human nature to do so and we are still human.  We just have to be ready to accept God's answer if we ask for it. So when I ask, "Why are the side effects from cancer medicines so bad, isn't the disease bad enough?", I know the answer will make sense and it's that belief that keeps me going.

Thursday, April 26, 2012

Remember the big picture

I just got home after my appointment.  I know I have been worried about the rash I have gotten since I was put on the new medication.  I've been so concerned with this rash that I have taken my eye off the big picture, killing off the cancer.  The lab work came back today and the numbers were great.  My platelets were up to 85 from 74, my bilirubin was down to 1.1 from 1.6 and the best news.....My tumor marker went down to 480 from 691!!  As of right now this is my new regimen of treatment , rash or not.  As long as it is working we will stay with it.  I was also prescribed some medication for the rash in order to calm it down.  It won't make it go away but, they said it will help.
This is the type of news I have been used to getting.  I will not take any of this type of news for granted because I have now experienced the alternative.  I will count the good news as a blessing and continue to pray for healing.  I have my 8th round of chemo tomorrow.  I ask for everyone to pray for an outcome like I had today.  I still ask for prayer regarding the "rash", it is not a good thing but, looking at the big picture, I can live with it.  That is the ultimate goal anyway.......living!

Wednesday, April 25, 2012

1st labs with new medication

I will be getting blood work done tomorrow afternoon.  This will be the first time since I've been on new meds.  I'm very curious to see what my numbers will be after one week of treatment.  The "rash" side effect of this new med is terrible.  I have the rash on my face, neck, head and chest.  It looks like a severe sunburn with acne type bumps.  It itches and burns at the same time.  I hope they can give me something to ease these symptoms.  My hope is that my counts are getting good enough so I can switch to a different medication.  Believe me, chemo is hard enough to handle by itself.  I do not need a nasty rash on top of everything else.  I'll post the results when I get them.

Monday, April 23, 2012

Update on new treatment

So far, so good.  My new treatment regimen is going pretty well.  Granted I've only been on it for three days but, I can tell the side effects dealing with fatigue, appetite, nausea, etc. is about the same as the other drugs I was taking.  That's good news because I have been able to handle those side effects pretty well so far.  What about the rash? Well, so far the rash is not shown itself in full force.  I feel like I have a sunburn and my cheeks and neck which are definitely showing redness.  I assume the rash will get progressively worse with each weekly infusion.  I have to remember that according to the research on this drug, the worse the rash, the better it's working.  That is it so far. I had a good weekend and I'm looking forward to a good week.  I hope you all have a good week also!

Friday, April 20, 2012

1st "New Start" injection complete

I've received my first injection of the drug Erbitux today.  This marks the start of what is called my "second-line of treatment".  All the nurses were very familiar with this drug and they were also very familiar with the major side effect, the rash.  As of tonight I have not felt any side effects that are different from the other drugs I was taking, mainly fatigue.  The rash seems to be a definite.  The severity of the rash is the question.  When we asked what to expect we were given the infamous "everyone is different" answer.  In severe cases it could be extremely painful and cause the treatment to be halted.  The moderate cases can be helped with pills and creams and the minor cases can be helped with OTC soaps and lotions.  As I said before, the rash looks like a blend of a burn and acne and covers your head, face, and upper body.  I'm working on the lines, "turn away I look hideous"; "I am not a monster" and Frankenstein's famous " ARRRRGH".  I guess it all depends on the severity of the rash.
The hospital Chaplin stopped by my room today and asked Vic and I how I was doing.  My answer was a simple "good".  Then he asked how we were doing spiritually and we both answered "tremendous".  He said he was happy to hear that because he always gives credit to God's miracles first and the doctors and nurses second.  We all agreed in the name of God for my recovery and after he left I realized what he said was so true.  Based on our answers regarding how I felt physically and spiritually, it confirmed we also believe the only true answer to my future is based on God's will and we are comfortable with that.  We know the knowledge and decisions of the doctors and nurses are all part of the bigger picture who's artist is our Lord Jesus.  Same prayers, different chapter.  Keep them coming.

Thursday, April 19, 2012

Time to start over

I just got back from my doctors appointment and the news was not real good.  The tumors in my liver are growing again.  I went into this appointment with a feeling that this was going to be the outcome.  My tumor markers were going up and I started to experience some liver pain over the past couple weeks.  My biggest fear was that the cancer had moved to my lungs or pancreas.  Thank God, this did not happen.  The tumor involvement has stayed confined to my liver.  What do we do now?  We start over with a different medication.  My doctor has decided to give me Erbitux.  This medication is administered via injection and is given to me every week.  I will continue to take my other 6 chemo pills every day for two weeks at a time, so I will be attacking the tumors by taking the same amount of medication, just at different intervals.  The main side affect for this new medication is not good.  I will be developing a severe rash on my face and upper body.  The rash looks like a combination of burns and acne.  I'm not to happy about that, but it beats out the alternative.  I started this battle at the end of November.  Six months later and I'm in much better shape now than I was at the beginning.  My first attempt to beat this showed excellent results but, unfortunately we came up short.  It's time to start over again and I pray for the same great results that I have enjoyed over the past 6 months.  One step at a time!

Wednesday, April 18, 2012

Scan complete

My PET scan is now done and it's in the hands of the radiologist and oncologist.  I have an appointment tomorrow for blood work/labs and a consultation with my doctor.  This consult will review my numbers and the results of the scan.  Hopefully with all this information we will be able to get some answers as to which way we will go regarding my treatment.  If everything goes well, I should be able to start round 7 of chemo on Friday.  I'll let you know the results tomorrow afternoon.  

Monday, April 16, 2012

Big week ahead

All things considered, I have really been enjoying the start to my week off from treatment.  I've been able to get out in the yard, cut some grass, work in the garden and best of all I have my dog back.  Believe me, Ramzi's energy is contagious and I love having him home whenever possible.                                         I've always been the one to handle the yard work.  The family joke has always been about the number of years I have spent trying to get the lawn perfect and it never happens. I would definitely say lawn care is  an obsession with me.  I would consider it laughable to have someone else riding on my lawn mower and cutting my grass.  Well, get ready to laugh because the unthinkable has happened.  It's amazing how a cancer diagnosis changes the way you think about everything.  I knew that I must teach Vic how to take care of and use the lawn mowing equipment.  She learned how to change oil, clean air filters, and charge and hook up batteries.  She was also "allowed" to cut the grass and did a great job with everything.  Although we were both happy with the results, we were also saddened by the reason for all this.  The last couple of lab results has given us reason to pause and think about the future.  We are both aware of the importance this weeks tests will have on how we proceed into the future.  I have the PET scan on Tuesday, the consultation with my doctor on Thursday and depending on the results, Chemo starts again on Friday.
It's going to be a long week. It looks like the weather is not going to be too bad and I should be able to get outside and do some things to keep my mind off the obvious.  As always, I will continue to pray for God's blessing and use the strength he has given me to cope with whatever news I receive.  I also want to thank everyone for your support.  Whether it's with comments on the blog or in person, I can't tell you how good it makes me feel to hear your thoughts.  Thanks again and God bless you all.

Thursday, April 12, 2012

Round 6 is over...here are the numbers

I've taken my last 3 pills for round 6.  This starts the good news portion of my post.  I went to the hospital today for blood work.  I was very nervous to hear the results.  Prior to this round my tumor marker was heading in the wrong direction, up.  The treatment itself seemed to be rougher to handle this round than it had been in the past.  When the Nurse Practitioner came in with the results she had all the numbers except for the tumor marker. I got the good news first.  My liver function numbers were all good and within the high side of normal.  My platelet count went up to 84 from 77.  The nurse said I am her only patient who's   count goes up during treatment.  She said it's strange but we will take it any way we can. The tumor marker was still not available.  She asked if we wanted to wait for the results and we said, "yes." After about 20 minutes she came in with he results and they were not what we had hoped for.  The bad news portion of this post, my tumor marker numbers went up again, 699 from 583.  Nobody has an absolute reason for this but, the PET scan that I have scheduled for next week will show definitively if there is tumor growth occurring.  I have to focus on the good because that information is confirmed, my liver is functioning well.  I cannot dwell on the bad because the reason for the tumor marker numbers rising is actually unknown at this time.  I have to be patient and positive.  I must trust in the Lord and accept his will.  I will continue to pray for healing and ask everyone to do the same.

Wednesday, April 11, 2012

2 Days Left For Round 6

Round 6 ends Thursday night and I'm looking forward to a week off of treatment but, before that happens, I have a very important appointment for blood work tomorrow.  As I mentioned before, this round has not been easy.  Prior to the start of this round I was told my tumor marker numbers showed tumor activity, which was something that has not happened since round 2.  I just did not feel good during this round.  I felt more fatigued and I started to experience some "liver pain" during the last week.  I am anxious too see the results of my lab work and discuss them with my doctor and nurse.  I am hoping to get back on track with some good numbers.  I will post the results of my lab work sometime later tomorrow.  Keep praying and have a great day!

Sunday, April 8, 2012

Thanks

I had a wonderful Easter today, I hope you did too.  Most people know one of my passions is to cook and this Easter gave me another opportunity to cook up a feast.  If you can recall, my surgery was performed during Thanksgiving week.  I missed the chance to make that meal.  As a matter of fact I supervised the meal prep from my computer in a hospital bed.  It was great to be back in my own kitchen preparing a brunch for friends and relatives.  I want to thank everyone that came over and shared their Easter with me and the family.  Now more than ever I try to soak in everything that's happening during the day.  It amazing to me how the kids all gather together to laugh and play as if they do it everyday.  The reality is they don't see each other that often.  Some live out of state and others are in college, but when they get together they don't skip a beat.  The different conversations going on throughout the house is music to my ears.  Moms talking to children, Dad's talking to Dad's, neighbors getting to know my relatives and on and on.  This is one of the special moments I think I will miss the most.  I am so blessed with great family and friends and the support I am getting from all of them is sometimes overwhelming.  My father in law prayed today before our meal and it was a very powerful moment.  He thanked God for the Easter miracle and all that he has given us.  He thanked God for our wonderful family and friends and he asked God for his healing power to be used on my illness.  I felt the wonderful presence of the Lord was with us and he will answer our prayers.  Thanks Pa.
I was even able to talk to the grand daughters via the computer today.  What a great day.  Good times with family and friends plus excellent food ( if I may say so myself).  It's a fact...HE IS  ALIVE !

Friday, April 6, 2012

Good Friday 2012

I know I've said I am going to take this battle one step at a time.  Well, I feel I have achieved another goal of mine ....Easter Weekend!  It has not been easy and I know I have quite an uphill journey ahead of me.  On this Good Friday I have to put everything in perspective based on the reason for the Easter Celebration.  As Christians we have a tendency to look at this weekend with the major emphasis on the resurrection of our Lord.  Not a bad thing to celebrate but, I want to remind everyone about the journey Jesus had to take. If you ever think you have it bad or rough, think about what Jesus was put through as he was paraded around town on his way to being crucified. He was made to carry his own heavy cross, stoned, beaten, his head was wrapped in thorns and he was ridiculed incessantly on the way to his death.  And we refer to this as "Good Friday"?  I don't think anyone else would have seen this as "good" but, Jesus did.  He willingly gave his life so our sins would be forgiven.  He knew the journey he had taken was God's will and by rising from the dead and taking his rightful place at the right hand of the father, he had confirmed God's love and plan for us.  It's never to tough as long as you believe in God's will.  Take a few minutes today and think about what is bothering you and offer it up to the Lord.  There is no battle that Jesus is not willing to help with.  He's been through much more!  Happy Easter.

Monday, April 2, 2012

Tough start to round 6

All things considered, I have been very blessed when it comes to how I have been able to handle my treatment.  It has been 5 months since my diagnosis and each treatment has shown improvement in my condition.  Whenever I did have a problem, my team came up with the right answers to solve those problems.  Physically I am doing well.  I've gained all my weight back and everywhere I go I am told how great I look based on my condition.  I believe all this good news has caused me to lower my guard mentally as to the reality of this battle.  As I explained in my last post, my tumor marker number (the number that shows tumor growth and/or tumor activity) went up over 200 points.  This happened one time before, after my second round.  Since then my tumor markers have been going down in a large way. I feel I was getting used to this trend and I believe I was starting to expect it.  I think this is why I am having a tough start to this round.  I was not ready for bad news.  I went into this battle with a three pronged approach, be strong spiritually, mentally and physically.  What a better time to get all three back on track, Holy Week.  During this week Jesus showed us the ultimate meaning of strength physically, mentally and spiritually.  He was beaten and crucified for his beliefs, he stayed strong throughout his ordeal and he willingly died in order to forgive us of our sins and grant us eternal life.  Physically, mentally and spiritually is the only way to get the job done.  If you are having a problem handling something in your life use the "stool approach".  No stool can support you with only one or two legs.  You need a minimum of three legs.  Stay active with a good walk, bike ride, gym workout or just go outside and play with the kids.  Keep sharp mentally.  Don't take things for granted, continue to always work on what's working.  Stay spiritually connected.  Thank God for all you have and pray daily for his guidance. I know I will getting back on track and I already feel better just by making the decision to do so.  I really appreciate all of you who follow my blog.  Your comments are very uplifting to me and I want you all to know that I also pray for you everyday.  Have a great day!