Putting the fear aside

We have not been idle but I wish we had.  We've had three ER visits in the last two weeks (one was for me - I joke that I was feeling neglected).  One biopsy (me again, docs aren't too concerned and we're not expecting anything to come back) two transfusions and one visit to a surgeon - and those are just the highlights.

Our latest adventure Tuesday night at the Marian ER included a 3 hour wait with 5 hours total, one very painful abscess lancing for Alex and a late night for all of us.  My biggest heartbreak is seeing Alex in pain; I have spent too much of my life seeing my children in pain and having very little control over it.  But my Alex is strong and brave and handled the pain like a grown man - how did he get so brave?  In the aftermath of that procedure I sat next to him, stroking his still bald head (because for some reason that brings him comfort) and I noticed his beautiful long eyelashes were almost gone.  Ever since he was a baby people have commented on how long and full his eyelashes are .....but those are fading fast.

After Tuesday, Alex continued to be in pain and we were able to see a surgeon today (Friday) who found the abscess had not been lanced in the ER (maybe Alex had two???) and had actually grown larger.  So, another very painful procedure for Alex today but he's feeling better know, so we'll see if this did the trick.  It'll be a 1-2 week healing process.

This bump in the road may be the answer to our dilemma of how much chemo is enough?  Eric & I have been conflicted in our desire to kill this cancer without overdoing it and causing more long term damage down the road.  Transplant patients have been shown to not need as much chemo to battle their PTLD cancer.  For whatever reason, they have responded to chemo well and fast; you'd think the opposite would be true since their immune system is compromised but it's not.  We won't proceed with his scheduled 4th and last round of chemo on Monday, 2/12.  His oncologist doesn't want to have him going through chemo and all that entails while battling an abscess so we have a change in plan.  Alex will have a bone marrow biopsy on the 23rd; if that comes back clean then we will probably proceed with a whittled down version of his RICE protocol and just have a few doses of the R - Rituxan.  Rituxan is one of the newer treatments used in fighting cancer and is not a chemotherapy drug. It is an antibody therapy drug used to treat a specific marker on cancer cells.  It is better tolerated and doesn't require a hospital stay.  

We had just gotten off the phone tonight with his oncologist, ironing out which antibiotics Alex should be on and feeling a sense of relief.  Eric promised the doctor we would NOT call him this weekend.  As I'm preparing to dress Alex's wound I see a bump in his neck and my stomach drops.  Have you ever felt that?  That sinking feeling where your whole chest sags and hope rushes out.  I can't remember all the times I've felt this way.  I remember the major ones; when we were with Alex at Loma Linda with his first cancer and Amy broke her leg at home, when Alex told us very nonchalantly over dinner that he had found a new lump in his neck, but mostly when Ian was sick.  I remember where I was and what was being said and reminding myself that I had to be strong for my children  That I couldn't let my fear show.

I'm almost afraid to touch this new, sudden lump; this can't be what I'm afraid it is - it can't be the lymphoma. But I do  touch it and hope rushes out.  But I remind myself of the time I found a lump in Alex's neck after his first bout with cancer and it turned out to be an infection; his body was reacting like it was supposed to.  And I remind myself that his body is fighting an abscess right now and I'm praying that God will be merciful and this will just be a normal reaction to that infection.  We'll start the antibiotics and see if this goes away over the weekend.  My ever practical husband isn't worried; he says it doesn't make sense that the cancer would come back this quickly and he's right but we've had the rug pulled out from underneath us before and it's hard to fight the fear.  It's hard to trust when the fear is so near.

I ask God, why?  Why can't we just have a week.....a few days without something hanging over our heads.  Without the fear of a new battle ahead of us?  Just a small reprieve so we can pretend that our lives our normal.  Where Alex could go on all the sporting trips he's planned with his uncle Mike that he just spent half an hour telling me about tonight?  Why does it always have to be SOMETHING  we have to watch for, wait for, look out for?  This mama bear is tired of waiting for a reprieve.......tired of being afraid.  

One of things that helps put things in perspective are Rick Warren's Daily Hope messages.  He's doing a series called "When you're hoping for a miracle."  I think that's pretty apropo, don't you?  Monday's message was about your life being shaped by your thoughts. He's also talked recently about fear.  Did you know that psychologists have found 645 fears that people have - such a plethora of choices!  And I know some of them intimately.
It's sometime a daily, hourly battle to fight fear because we have walked through the valley and seen how dark it is.  But as I'm writing this, I can hear Alex in his room planning trips with his Uncle Michael.  In this Alex is my example; he continues to live his life, he continues to make plans for the future, he continues to put the fear aside.  God help me to put the fear aside and not miss today.