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.