What do I do now?

These past couple weeks have been the most difficult, both mentally and physically, I've had to deal with so far.  As time marches on during this battle the chance of figuring out the question,"What now?" is getting harder to answer.  When I had my original surgery I knew the plan was to remove the colon tumor and start treating the liver cancer with Chemotherapy.  I was able to track my progress as I watched my tumor marker go down.  The side effects from the drugs were as advertised and I was tolerating them very well.  When the first chemo drug stopped working, we quickly starting using a different drug.  It all seemed very seamless.  The results of the new drug were great.  My tumor marker continued to plummet. I was reminded at every session how far I've come and what great job I am doing.  I felt I was going in the right direction, so when I started to get finger infections from the chemo, I accepted it as a minor set back.  We will change drugs, have some minor surgery to fix my fingers and restart the program.  During the wait time for the surgery to heal I was reminded that the cancer was still there.  My blood work showed the tumors were growing and I needed to get back on treatment ASAP.  Once I was able to get back on the juice, I hoped everything would fall back into place.  Good reports from blood work, tumor marker declining and just a better physical feeling was in the future. Right?   Not right.  The new medication was causing my blood pressure to rise to dangerous levels.  The drugs I was given to help that problem made me sick.  The chemo drug itself did not perform well against the cancer.  I had to get off this drug and find something that will work.  This is where the reality of the situation is starting to come into focus.  In order for me to be able to take any of the remaining chemo drugs, my platelet count had to be higher. The only option left to increase my platelets was to have my spleen removed.  My initial thought was well let's go.  My colon surgery recuperation was not that bad.  What I failed to remember was that my body has just been through 15 months of chemo and it is pretty beat up.  I also had the unfortunate situation where my spleen was very large and this caused the surgeon to have to use an additional incision in order to get it out of my body.  Needless to say, this surgery was very,very rough.  My recuperation has been a nightmare. This is where I begin to question what I am doing.  I am having to deal with pain, insomnia, constipation, nausea and just that overall terrible feeling 24/7.  Now remember, I'm not the only one who has to deal with this.  Vic has had to put up with this also.  The question "What do I do now?" covers both of us.  The hospital called Vic the day after my release to let us know they had decided to cancel my chemo treatment visit due to the surgical recovery.  I agreed immediately and starting to focus on feeling better.  I kept telling Vic that I need to get back on chemo.  I could tell my tumors were growing again.  Vic told me not to worry so much about treatment.  She knew I needed to put all my energy towards getting better from the surgery.  Boy was she right.  I just felt worse every day.  When we showed up at the hospital for my chemo appointment this week, the nurses seemed to pay special attention to me.  After my original blood work and exam it was time for the truth.  No treatment again.  Instead, the nurses started taking more blood and the NP ordered a full bacterial panel.  She also told us that she did not like the way my lungs sounded and and ordered a chest X-ray.  She was also concerned with the amount of pain I had associated with the surgery and I had told her I was running a fever on and off all week.  The surgeon on duty was asked to see me and examine my incisions.  Vic was right, they are not concerned with my cancer, they were just concerned with me and my physical well being at the time.  This was the first time I felt like the cancer was a secondary concern.  I don't know why the Lord caused one of the older nurses to look into Vic's eyes, but when she did, Vic started to cry.  The nurse left the room and everything continued on.  One more blood draw and we would be on our way home.  So far all the tests are coming back OK.  The nurse was about to take the last vial of blood when she said my medical port is clogged.  She tried again.  Another nurse tried and yet another.  Nobody could get it to work.  The only thing to do was to call to the pharmacy and get some solution to unclog the port.  This will take about 30 minutes.  We waited there all day so far so what's another 1/2 hr going to do.  A half hour went by and the nurse was ready to take another shot at it.  Nothing! Still clogged.  She asked if we could  please try one more time. I agreed and she put another injection of cleaner into my port.  Time to wait again.  Then a knock on the door.  I'll tell you truthfully I said to myself "Now What".  It was Amy, one of the  cancer counselors at the hospital.  Their organization is called Stillwaters and it is a no charge service for cancer patients and their families.  We had never talked with anyone from Stillwaters before and we wondered why she stopped today.  She said she was called by a nurse and was told to hurry over because she has someone who is having a tough day.  I'm not going to get into what we discussed because it was a little about a lot. Let's just say that the Lord knows when you need him most.  It was an excellent outlet emotionally for Vic and I.  We have come to the conclusion that we need to ask more questions and start taking more control of my treatment.  I have to start doing what's best for my family and my quality of life.  I need to do things based on memories that will be created as opposed to when my next treatment is scheduled.  My faith is still strong and God's plan is the only plan.  I just think the plan is changing a little.  We need your prayers now more than ever.
Keep praying!