Wednesday, July 27, 2016

Day 1: Steroid Productivity

Ahhhh yes. One of the up sides of steroids- the almost manic, burst in energy. 12:35am and it may as well be 6 am. Post coffee.

The discussion with the neurosurgeon went like this...

There is growth(we know that) words words words words, spectroscopy background- this part fluid, this part, probably tumor. It could be necrosis, it could be mixed necrosis and tumor, but it looks like some growth is tumor. We can't know for sure unless we cut it out.


But good things- no symptoms. We can treat some of the swelling with steroids, and watch the growth. He is comfortable waiting 6 weeks from the scan to rescan which is 2-3 weeks from now. That doesn't seem particularly far away. IF it is stable(please please please please be stable) we wait and rescan in a month to 6 weeks. IF it has a minor growth(please please please be minor to stable-we are actually hoping for necrosis at this point- lesser of the evils) we have a serious discussion about surgery and what exact point we need to control what's going on and we will rescan. If there is growth(GDMFCSSOB) then we discuss surgery. We go over a little about the surgery and have the- some unpleasant side effects but buying time discussion. I know all of this. It ALWAYS sucks to have this discussion and I've had it far too many fucking times in my life. For me, for others.  But then again here I am. Let's do this. Let's dance.

Phil is pondering. He is very calm, even, pragmatic. He wants numbers, percentages of risk, mm-cm in growth, what stages of growth mean what for discussion, timeline, a plan. I can see he's got about 6 different pages loaded in his brain and already emergency planning, drafting schedules, trying to figure out plan A, B and C. I see it starting to dawn on him. He is a do not worry until you have to person. We are getting dangerously close to have to. And somehow this is the shittiest part for me. In the waterfall of tears that fell last week- the worst are driven by the how much this impacts the ones I love.

The discussion on steroids goes like this....

doc: I think we should try some steroids. You've had some problems in the past?

Well, yeah I kinda get this roid rage problem. It's noticeable. But I guess as far as side effects go- well there's the acne- and the insomnia and the anxiety, and the carb craving. indigestion. Minor but annoying. But if swelling is going on that's bad, so we probably got to deal with that. Can we try a low dose to start?

doc: I'd like to try 8 milligrams to start. At least the first day then we can decrease to 4.

Ok, how about 2?

doc: hmm. ok, I'd like to still do 4 milligrams to start, 4 times a day then 2 milligrams 4 times a day.

Um- wait, I was talking about 2 milligrams a day- total.

doc: sighs. You know how you react. what about 2 milligrams twice a day, or you could take 4 milligrams all in the morning.

I will do what you think is best( I will not like it but this negotiation is telling. Doc doesn't like to use steroids unless he has to).

doc: let me put the order in, you can go right down to radiology and schedule your MRI.

They won't have it ready til tomorrow.

doc, confused: it should be ready right away. (walks us to door)

oh yeah, your order will be there but it takes the radiologist 24 hours to review it, yada yada.

doc; but they know your family down there. He stops, thinks- 2 milligrams, twice a day is ok but call for any symptoms or changes.

I know right, somehow still, no. It takes 24 hours to schedule. (And we don't have a family suite or a parking space either, but somehow we manage. The valet dudes' are grateful for our contributions towards their kids' college education and have been very gracious and I think Mutnt has an honorary spot with them thanks to the Phil Mallory tip on the way in and way out system.) We wait far too long for a prescription of dexamethasone that I already have. I don't want to talk about my home apothecary. It's also fairly difficult to dispose of expired meds. Another pondering for another time.

We get home just in time for Phil to run Kiera to dance class. Lily comes and hugs me. Did I mention she offered to come and sit with me at chemo- because it would be fun. She worries about me and I think this is her way of trying to hear what's going on. That or she thinks we spend the whole day eating out without her. I decide to have a talk with her tomorrow. Ease some of her fears with realistic optimism.

I can tell Phil is drained.  We have to stagger our dealing with this to accommodate our supporter/supportee roles. We argue about stupid stuff , because that's what you do when you are sad and mad and stressed. And we will meet somewhere in the middle and hug it out and help each other through this.

This morning I eat something to protect my stomach and take 4 milligrams of dexamethasone. By 9 O'clock I can't sit still. Phillip and the littles have piano and Kiera is helping me collect bags for goodwill. I have to drop medical papers off at school for Lily and we might as well declutter in the process. Lily and Bella want to go too- so we wait until lessons are over. We talk about house cleaning after and the plan.

We get home- I make lunch and since they know it's time to clean Bella asks Kiera for a ballet lesson. After 30 minutes of ballet- suddenly everyone disappears, except Kiera- she wants to clean. I find Bella asleep on the front room floor and figure it's probably better to let her sleep. 3 hours later we have organized a pantry, the kitchen desk and a shelf in the cabinet. She has to head out to ballet and makes me promise to clean off the table for dinner. She knows otherwise I might sit down and not get up. Because this is a lot of activity for me day after chemo. But- roids.  I look at the clock- it's 5pm. I check in on Facebook land and chat with friend. There is no way I'm taking more. I'll never get to sleep. I clean off the table and fix dinner.

It's almost 8pm when we eat. Add bizarro time warp to steroid side effects- up side is I still have energy to watch some tv with Phil. And read for an hour. And then I try to sleep and well, here I am. This is not bad, the anxiety isn't too bad. Except it is 1 o'clock and I'm awake. The quiet is kinda nice.    I'll schedule the MRI tomorrow, or thursday when I go in to have my ECHO. Until then I will try to take advantage of the up sides of this new phase.

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Lily Kay Monkey

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