This week ...just pain in my gut but, joy in my heart

This week was a crap shoot for treatment.  The medical team decided I should take the week off.  Actually I'm glad they did.  When I had my colon surgery I still possessed my super fast healing powers.  Unfortunately, 15 months of chemo has wiped it out and I am not healing well.  I am feeling a lot of pain throughout my midsection and this makes it very hard to get comfortable to rest.  My sleep patterns are strange at best.  Sometimes I will sleep for a couple hours and other times I cannot sleep for more than 20 minutes.  Time for the snowball affect.  No sleep, no appetite and crabby.  Not fun to be around!!  SORRY everyone.  It will get better everyday and hopefully the spleenectomy will have done it's job and we can get back at.

Now, for the joy.  Another one drops off the bucket list.  As of Friday Sam and Ali are officially engaged, with a ring and everything!!  This is great news and we will all be celebrating when everyone is over for Easter.  Oh yeah, we are still doing the famous Easter Brunch.  Thanks Vic for filling in for my depleted super powers  Happy Easter- He is Alive!!

I'm home

Finally I'm home from the surgery.  I was not able to post during the time I was there due to a couple items.  #1) the internet hookup at the hospital was terrible and every time I felt I had time to do something I could not get in.  #2) I was very sore and based on the drugs they were giving me, I kinda lost my mind for awhile.  Everyone there felt it would be best that I don't write anything.  The combination of oxcy, and morphine for pain and 3 or 4 other meds for nausea caused me to hallucinate.  I hear it was very funny.  Just for an example, I woke up from a 5 minute nap.  I firmly believed I was in my own home.  I asked Vic where did we get that ugly picture on the wall and she told me she bought it for $200 dollars.  I got really mad and then when I realized everyone was laughing, I knew I was in the hospital.  I spent most of my time sleeping.  The good news is that my platelet count was up to 333 as of this afternoon.  The surgeon referred to my spleen as huge and had to make an additional 7 inch incision to remove it.  I will hear tomorrow if my chemo treatment will stay on schedule.  I think it will.  Thanks for all the support from everyone.  Keep praying!!

Surgery week

It's been a long week.  I have had to prep for my spleen removal.  Since the spleen fights bacteria in the blood, on Monday I had to get inoculations for pneumonia, meningitis and HIB.  On Wednesday I had to get blood work done for a type and crossmatch because I will need platelet transfusions before, during and after the surgery.  I've received 3 different calls from the hospital to review my procedure, pre register me and inform me what I can and can't do before the surgery.  I think I am ready to go.  I will admit, the closer it gets the more nervous I am getting.  When I had my colon surgery I didn't have any time to think about what was going on.  I was told at night I needed the surgery and the next day I was under the knife.  I've had almost a week to think about this one and I think my mind has gone over every scenario possible.  I know Vic has also been very tense this week.  I ask for your prayers that we have a good outcome tomorrow and I heal quickly so I can get back to the fight.  I'll talk to you soon.

To spleen or not to spleen....

What a week.  I have not relayed any info regarding my doctor and hospital visits this week because I did not know what was going to happen.  Now I do, so here you go.  I met with the Oncologist on Wednesday for a review of my progress.  The numbers all looked good.  My liver function was still ok and my tumor marker went down again to 78.  I was pretty happy with those results.  Then came my platelet count....63.  This was the number that the doctor was waiting for and it wasn't what he wanted to see.  He explained to us that although the Erbitux was doing a good job on the tumors now, we have to be aware that the finger infections are back and the use of this drug is not a long term option.  He went on to explain that the remaining available treatment options are all platelet driven and my platelet counts are just too low to use any of them now.  The only way to increase my platelet count is to have my spleen removed.  So, he called the surgeon and set up an appointment for us to meet with him for a consultation.  That consult took place on Friday afternoon.  Not to get ahead of myself, I still had chemo treatment on Thursday.  Our plan is to continue with the weekly Erbitux infusions as long as we can.  We will stop when the finger infections get to the point of being dangerous.  Our best estimate is 2 to 4 more weeks.  Now, back to Friday.  We met with the surgeon in the afternoon.  The good news is that the surgeon is the same one that did my first surgery and we really like him.  He looked at the scans and immediately agreed that my spleen is very large and needs to come out.  He feels there is a 60% chance that this will work in getting my platelet count up.  My surgery is scheduled for Thursday at 3:30pm.  The good news is that I will be able to watch some good March Madness basketball while I'm recuperating. So I got that going for me!  I'm going to take a rest now.  Keep praying.

Time to write again

It's been awhile since my last post. I've had people ask why I  haven't been posting as much as I did in the past.  I've been thinking of an answer for that question and I think I finally got it.  It has been almost  15 months since I was diagnosed with terminal cancer.  When I was initially diagnosed my emotions took off at a million miles per hour.  I did not know how long I had and I was trying to fit in as much as possible in the time that I did have.  As time went on and my treatment started to show some promise my urgency to get things done seemed to slow down.  I shifted my energy towards the treatment and the chance that it was working to cure me.  Unfortunately this was short lived.  The side effects of the treatment was too much to handle and we had to slow down.  This gave the cancer a chance to get the upper hand and the tumors began to grow once again.  Now we had to re-group one more time.  We decided to go back to a treatment regimen that has worked on the tumors in the past but, has shown some very nasty side effects.  This is were we are now.  I am back to weekly treatments.  My blood work numbers have been good but, the finger infections, upper body rash and low platelet count are all back.  The big question is how long before I have to stop this treatment and switch to something else.  Is this going to be the norm for my future? Am I going to be jumping from treatment to treatment, side effect to side effect and gain no ground?  Here is the answer to my initial question.  I am not in denial of my illness, I am just ignoring it.  This is why I am not writing about it. I feel I have nothing new to say.  I'm spinning my wheels.  I definitely needed a push to get off dead center and I got that push.  Making a sort of spur of the moment decision, Vic and I decided to drive out to Baltimore and attend Caroline's 3rd birthday party.  Well, we did it and we just got back.  This trip was just what I needed to get my mind back on track.
As I mentioned, we did drive out.  This drive turned out to be a blessing in itself.  This was the first time Vic and I had the opportunity to spend time together without any distractions.  It was a 26 hr round trip and I loved it.  We were able to talk about the past, the present and the future.  We laughed, cried and generally had a good time being alone together.  We decided we will definitely do it again in the future.
It has always been tough to have Matt and Allison living out east.  Even though we spend a lot of time on the computer and the phone, there is nothing like being able to give them a hug, talk over a cup of coffee or go out to dinner together.  Any time I am able to spend time face to face with them is a true blessing.  Thanks you guys for the opportunity.
I have said it before and I will say it again.  Spending time with the grand children is the best medicine I could ever ask for.  Seeing my two girls and my little boy renew my urgency to make certain I am getting the most out of the time I have.  This is not some sort of doom and gloom vision of my life, it is a wake up call to continue to pray for a miracle but, while I am waiting for God's will, I will try to get the most out of what I have left.  I think this is something we should all do.  It certainly doesn't take much time, money or energy.  What did I do with the kids over the weekend? Musical chairs, reading books, watching them dance, allowing them in my bed in the morning to watch cartoons, playing make believe, tucking them in bed at night and saying prayers together, making pancakes together, walking Lillian into school, attending Caroline's birthday party, feeding Owen, walking him to sleep, cuddling him on my chest while he naps, making him smile and coo just to name a few.
If you feel your life in spinning it's wheels, try some of these little things with the people you love. I promise you will feel better.  I know I do.  Keep praying!