DW

Scott and I were talking last week, and we have kind of hit a mile marker of sorts - we have become "disease-weary".  DW.  

We had come to the place of not wanting to analyze every nose bleed, or every little rash that pops up, or sore shin bones (it's because I am such an awesome *runner* on that treadmill for *one-half-mile* every day it appears).  We were tired of trying this drug, that drug, what worked last week, what do you think will work this week?  If carbo made you want to jump out the window the second time you had it, and then steroids seemed to help it a little bit, and you only wanted to jump through the window the third time you had it - what should we plan on for next time? 

On and on and on and on - the analysis of "what could make it better" or "what was going on" or "should we be concerned over this" just never stopped.  Something new and weird popped up every day it seemed, and it is not only taxing on the body going through it, it is taxing on the body trying to help. 

There is scads of information out there that I cannot process in my chemo brain state of mind.  So we take copious notes when meeting with my doctors, nurse managers, nurse practitioners, etc, etc, and then go over those when it gets rough - and at times even they are a bit contradictory. 

We have been going to the Stephanie Speilman Breast Cancer Center on Olentangy River Road once a week for about two months now (the first 5 weeks were at OSU hospital) and I have not had the same chemo nurse twice.  It seemed odd to me - I like them all, they are really good at their jobs - but it was curious to me why I had not had the same nurse twice.  Then it hit me yesterday, when my study-nurse-manager Julie came in the room with the bad news - she looked like she had been put through a strainer.  She sees me and the others every week.  It looks to be a very difficult, draining job. 

I'm guessing, if the nurses don't see you more than once, it makes it much easier for them to stay in the job emotionally. 

Scott is not so lucky.  He is whipped and tired and careworn beyond his limitations, and right now I am looking for someone to mow our yard, at least until school is out.  (So if you know of a nice, cheap lawn service - let me know.  He's kind of bossy about his yard, so it's not something I want friends doing..... He used to tell me how to do it when he was down and out watching from an upstairs window......) 

Because of my germ-warfare and nauseousness, I'm not in the kitchen for anything.  He likes to cook, but he is used to my help as far as cleanup or prep goes.  He can clean and do laundry and run me to treatments, but it is a lot and still try to work, and he is weary now going on three months. 

I know how hard it all is - I took care of him for almost 6 months a few years back - only then we were traveling north to the Cleveland Clinic.  So he is the best and most supportive of all caretakers, as he has a keen memory of what it was like to feel so lousy and need so much from your significant other.   

But he is tired, I am tired and we just decided last week that we were "disease-weary". 

So yesterday when they came in and told me the blood work results, I just barely blinked.   I kind of knew it going in - I had not started to feel better after my transfusion until Monday, but was still hopeful that I was wrong. 

I asked them all the right questions, gave them all the right answers - and then we packed up and left.  Scott took it much harder than me.  I was ok mostly until last night, then I sobbed.  This treatment could mean a lot a couple of months and a couple of years down the road.  I know that, but also I know that in my soul, that it's ok.  I have to work it out - pray it out - cry it out - drive out the fear every time, but then it's ok in my soul. 

This week anyways.  It's a continual job. 

A friend of mine posted this on Facebook today, and I just thought I would share it.  Sometimes I think we have lost something by not knowing some of these older songs to sing in times of duress and stress.  My mom loved Johnny Cash so we had a few of his albums growing up. 

And honestly, I had to laugh when I heard the lyrics - when I am on the treadmill, I *practice* smiling.  I don't want to become grim and overcome with this disease to the point where my lips cannot curl upward easily.  (I hope there are no binoculars trained on my back window - it would truly be a sight - one mostly out of shape lady hashing it out on a treadmill with a plastic smile on her face.....) 

I will walk this road a while
I will walk it with a smile
I will take it in my stride
Someday I'll be satisfied

Life is just a passing moment
On an never ending trail
Though my pathway wanders for a while
Someday my ship will sail