May 06 2011
Dealing with Medicaid is a special hell, in terms of getting things scheduled and actually done. Each procedure needs “pre-authorization” that takes anywhere from 1-5 days, so nothing happens on a speedy time frame and there have been several re-schedules due to the authorizations not going through.
Radiation finished up last week, though the effects will be ongoing for a few weeks according to the doctors. Skin irritation on the abdomen, and some variable and lack of sensation in the anal and vaginal areas continue, hopefully as temporary effects. Hips are definitely still quite unstable, and the left hip continues to have very uncomfortable problems that make me think there is something bad happening on that side beyond compensatory imbalance. I definitely want to be wrong on that feeling.
We did another chest/abdomen/pelvis CT scan post radiation today (finally, after 3 reschedules) so that will hopefully tell us more about whether there is anything newly wrong on the left hip, as well as the progress so far from radiation treatment. It was painful and I was unable to straighten my left leg, thankfully we could arrange pillow props under my knee and still do the scan I cried and had to break once to sit up for a bit, but didn’t scream so that is some improvement from when I first began radiation a few weeks ago. Next week we have a consult for installing a port catheter in my chest for chemotherapy (and hopefully also the install itself, assuming we successfully navigate the pre-authorizations). My medical oncologist said that while the port will be sore for a few days, there’s nothing stopping us from beginning chemo right after it is in. So possibly as early as late next week, almost surely by the week after, I’ll be beginning chemotherapy treatments. We will do some number of these, every 2-3 weeks depending on how my blood cell count keeps up and in healthy ranges. Then we’ll schedule a mastectomy, which for me can’t come fast enough at this point because the lump under my arm is getting to be in the way and really painful. I am hoping it responds well to chemo so I can get some relief before surgery, but if it keeps up this bad I will of course be talking to the doctor to see if we have other options sooner like radiation for that spot or something.
I’m actually reading a couple of books, which I haven’t done in quite a long time. It’s good, it’s sparking writerly thoughts, unsurprisingly. My brain seems to be taking on the logistics of figuring out how it wants to be working during all of this madness, which pleases me since it’s a good brain and generally solves those types of problems well. Patience with the progress is a little trickier but I’m managing it admirably given everything else, I’d say.
I keep promising baby posts but reneging; hopefully I’ll quit being that naughty. In the meantime, still perfect baby, still awesomely low maintenance, still gorgeous and developing her superpowers daily. If you’re local, come meet her and join her fan club!