Thursday, January 16, 2014

Plan Be

For all the unfortunate things that have happened in my life, karma continues to try to provide me balance. The majority of this balance is being navigated, crafted, invented and hard won by my best friend.

He makes me feel better. He makes me want to be better. He makes me better.

When this started and I was spending the better part of entire nights in the bathroom- worrying about him and how he was going to function the next day at work if I kept making a ruckus- he would wrap me in his arms each time I got back to bed and say amazing things like- thank you for doing this. For us. For me.

And I would reply things like- well if I didn't there would be a mess in the bed and neither one of us would be sleeping.  At a different point in our marriage - that might have been a good thing.

The next time- Thank you for doing chemo and being so tough for us. For me.

And I would reply something like- I'm not tough. I'm broken. I'm sorry your wife is broken.

And he would reply- even broken, my wife is better than 95% of the wives I've met.

And I say- what exactly makes that 5% better? And he laughs and he still somehow thinks I'm amazing.  I bet that 5% sleeps through the night.

This month is tough. We have 2 chemos(1 down, 1 to go) Lily's endocrine appointment, Phillip's endocrine appointment and all of the ancillary appointments, tests, etc that come along with them. Then I have Lily's school- who now that we are into January of 2014 is fiddling around  with her emergency plan because they might get a nurse who might be able to administer Lily's emergency shot in an emergency. I just like saying the word emergency.

At first I was relieved and happy and grateful that the universe was providing this extra layer of protection for Lily monkey at a time when I may not always be available or near. And now 3 months later- the only thing that has been reaffirmed is that I sure hope the universe is better prepared to help out in a true emergency because this plan is failing.  I've signed countless papers elucidating- the plan. I've signed releases of papers to release the plan to get doctors and nurses to sign off on- the plan. I've taken calls about- the plan. I've had 3 meetings about- the plan. And more calls about - the plan. And yet there is this plan that no one can follow because not everyone has seen the plan.  Lily's teacher is absolutely amazing and compassionate and working with me. Her counselor also tries to make my life easier- going so far as to bring paperwork to the car for me to sign in the carpool line. Her endocrinologist is thorough and very clear on her needs for- the plan. So one would think that everything would fall into place. I'm not holding my breath. The only thing that seems to be affecting the plan is a looming field trip. According to -the plan- a skilled nurse can go on field trips instead of me. Yet since the plan is not in place- we need to have -the Plan B. Which is for Phil or my neighbor to go on said field trip.  I feel bad for Lily's teacher. She's trying to make me comfortable and help and make lily happy and work within the system and I just want to crawl into bed. I would love to go. I would love to feel well enough to go. I don't want any of it to be a problem. Phil's already finagling so many days this month to go to all the appointments and now Lily wants him to be her field trip buddy.

I hate that he is trying to juggle all the stuff I normally juggle. I hate that he knows I wouldn't drop the ball and he's madly juggling and balls keep flying into the mix. I hate that I can't just say screw it and let the balls fall.  I hate that I know exactly how he feels and there is nothing I can do. I can't even pretend it doesn't matter because he knows it does. I just want to grab random balls and hurl them at - the plan.

So he takes Lily to see her endocrinologist. Actually it went like this- Jen delivers Lily to Phil at work- Phil takes Lily to Tripler- Jen runs back to get other children from school- goes home. Lily walks in after her appointment and proudly announces she had 2 X-rays- well it was actually like 4 X-rays- this one(she holds her hand flat- thats to get a rough bone age to see if she still has accelerated growth) this one(she stands tall- chest X-ray to check for toomas) and this one(she hunches over- the second of the chest X-ray set) but they messed this one up(she hunches over again) and so we had to do it again. Daddy was mad.

I start to fume- with my anti radiation policy- I'm about to pop a gasket- Phil walks in- before you hear from Lily she had 3 X-rays and I schooled them about their incompetence and the chest X-ray is in place of the CT scan this round so it's less radiation overall. I smile. He's got the Plan. He's wonderful. Except he's carrying a big bag from the pharmacy with a vat for a 24 hour urine catch and I really can't for the life of me figure out when she is home for 24 hours straight and I really don't want to go mobile with a refrigerated vat of pee. Man things are hectic. And I'm clumsy- lord help us if I spill the pee. One more thing to worry about and Phil is writing the next appointment to check her hormone levels on the calendar and explaining the MRI plan. We are going to just do abdominal MRI this time- try it non sedated but schedule a sedated slot in case. Ugh we tried this last time- the sedation slots always come open before the non sedated slots. We'll figure it out. Her full body scan can be pushed back to July and coincide with the other 3 kids annual scans. I can't think past this week so- that will have to ferment in the queue.  All in all we have a few things to do to follow up with Lily and her growth- but it's our routine. She is doing good and is far enough out from treatment that we are getting some wiggle room in scans. Wiggle room that has already been appropriated to other needs- but that's all in a days work.

The next morning we turn around and head back to my oncology appointment. You kinda never know if it's just a touching base kinda thing or if there's a bomb somewhere about to get hurled at you. I prepare myself for either case- trying not to worry and telling myself it's routine and worrying just enough that I won't be blindsided by requests for scans or ovaries or something else. Somewhere in there we realize that I am due for chemo on next Monday and there are signs all over saying they are closed on Monday. Probably a good  idea to get that figured out.

The onc looks me over. Seems to be fairly impressed and doesn't make it sound like I'm dying this month- so that's good. I resort to inappropriate humor because that's what I do when I'm nervous. The one thing I want to know is- is there an end in sight to the one chemo or is it a forever thing like the other 2. He pauses and is calculating his response.  I appreciate that but the answer was in the pause.  The only reason I will get to stop the chemo is if the side effects become such that I need a break.  Whether that is fatigue or GI issues or rashes or whatnot- pretty much as long as it "works" - I will be on it. If it stops working. Well that's not good. So I focus on the- is it working portion. The results of the Xray before last cycle implied it was working. He pulls up the X-rays and puts them side by side- a couple weeks ago and September.  I see the tumors smattered about. They aren't as glaring as on the PET/CT but that is the nature of Xray. But they definitely are "not as conspicuous" in the recent Xray.  This plan is indefinite. When it becomes finite, we worry. So we wait and we plug along and we hope.

We schedule chemo for this Friday instead of next week because Phillip has his endocrinology appointment next week.  They draw blood while I am there and hopefully that will make friday a shorter day. I make the nurse draw it from my arm instead of my port because last time she drew my port it hurt and this is my way of testing her. I have shitty veins. She gets it first try. Ok, she can be trusted. We are walking to the car when it occurs to me.  I guess this bald thing is essentially permanent. And I felt sad for a minute. Then I give myself a gut check. I'd been playing  the "would you rather" game with some friends online and it occurred to me- this would you rather was a no brainer. Would you rather be bald or the alternative which is not BE at all?  I'll stick with this plan. Plan Be.

And last night- after one of my bathroom excursions- Phil rolled over and wrapped his arms around me and thanked me again for doing this for us. For him. And for a change I say nothing.  Because it's all part of the plan. There is no place I would rather be, no one I would rather be with and I would do absolutely anything to be the woman he thinks I am, to be the woman he deserves. And to do that I will have to continue with Plan Be.

1 comment:

  1. BE-lieve. You are doing a great job.


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)