Oct 06 2011

Bandage-free (for what it’s worth) and general update

I’ve finally been cleared to stop wearing the bandages around my chest, after having to do so every day for five solid weeks (there were a couple of days that we gave me a few hours to “air out” but those don’t really count).  Part of why this was so irritating is that a lot of the skin that the bandages covered has radiation recall, which is a condition or side effect that happens to skin that gets too much radiation (say, from having to get irradiated twice when you’re only supposed to get it once and definitely not while on chemo).  Even though the skin isn’t particularly discolored it feels like it constantly has a small rash or varying degrees of irritation, especially if anything rubs against it.  They hand out handfuls of little sample tubes of Aquaphor, a petroleum-based intense skin therapy ointment at the radiation clinic for just that purpose, but other than keeping a couple to fit in my purse just in case I need it on the go, I’ve long since run through the free stuff.  We’re going through this tub pretty quickly too.

So I should be happier about being bandage-free; after all, it took up a good 30-45 minutes of each day, irritated the heck out of my skin, and was just generally all around a pain (figuratively and literally).  But I hurt just as much if not more without the bandages (to the point of tears getting back into bed several times this week).  There are still pockets of fluid inside me that I can feel move around (and sometimes hear, gross eww yuck).  The doctor attempted to aspirate two different areas this Tuesday visit to get some of the extra fluid out, but apparently while there’s enough to be noticeable, there’s not enough to actually get out with a needle.  This is supposed to be a good thing — it means that my body has a good chance of absorbing it all on its very own, though of course if I notice abnormal swelling call the doc to go in and be aspirated again.  And there’s still a centimeter-sized indentation/hole on my right side that everyone says is closing up quite nicely, but walking around with a hole in one’s skin makes for some paranoia.  At least it’s mostly stopped squeaking this past week.  Now all I have to put up with are the nasty squishy sounds from the internal (but small, really!) fluid pockets.

I’ve got a prescription for lymphedema sleeves and gauntlets; now must find out if Medicaid covers it.  I think I’ll have to make yet another appointment for someone to measure me and tell me what size to get, if I recall last year correctly, though I suppose policy could have changed.  The difference there is that last year, I had the chance to stay on top of things and only come close to actually getting lymphedema.  This year, I got it while on steroid medication and in the hospital, so I never had a chance to do any of the preventative measures I did last year.  It’s one of those things that once you have it, you can control it, but it never quite goes away.  Every time I go on a plane, or exercise, or on flare-up days that you can’t predict the frequency of, I’ll have to wear them.  If I’m lucky, that won’t be every day.  Again, I’ll soon put up a wishlist for those who want to get me a nice birthday or holiday present, since the ones Medicaid is likely to cover are the racistly-named “skin tone” beige color.  Those are fine for around the house I suppose, but I don’t see why something like that has to be ugly to be functional.  There’s a nice company called LympheDivas that has them in bright colors and awesome patterns, and flashy beauty is definitely deserved for going out and about.  Sort of like when I wear brightly colored scarves on my head when out, rather than a neutral-toned hat or beanie — I’m certainly not trying to hide my illness, and if I have to wear them anyway, might as well be fabulous about it.  There’s apparently even a shop in Austin that I will have to get out to and check over once I’m a bit more mobile.

And that’s the most frustrating part.  They were NOT kidding when they said this surgery would take twice as long for me to heal from.  I’m not even back to where I was pre-surgery in my healing from all the other stuff cancer-wise I was healing from before whacking the rest of my boobs off.  Back still hurts, fatigue at near maximum levels (still passing out over the keyboard or while watching shows).  Most days I don’t even feel close to that pre-surgery landmark, much less moving past it to healthier zones.  I am up to doing what I count as PT every day; walking, especially up hall inclines for doctor’s appointments or around the pharmacy or other errand counts.  So does holding the ever-squirming baby or helping to feed her solid food.  Still doing the in-bed exercises for my legs, focusing on those glutes and quads that are weak as jello.  Tried a couple of arm exercises, those don’t go as well and the past couple of days I’ve used my arms WAY too hard — as in I probably shouldn’t be typing and certainly not this much, it’s that bad.  If I’m *lucky*, the next week will get me back to pre-mastectomy health zones, but I can’t count on it.  I just have to keep doing what I’m doing and hope that it will get me there eventually, since they said it would be more like 12 weeks of recovery.  From the surgery.  And then I could start actually moving toward better health states.  I don’t know if this stuff teaches patience or forces it, most days it’s just put one foot in front of the other (metaphorically) to get through and hope that the little bit better is around the next corner.  And the next. And the next…

And next week is another bone treatment infusion, which will set me back a few days with extra bone pain and fatigue and all that not-fun.   I am so very tired of this.  It’s better than dying, for sure.  But so, so, tired.  Life doesn’t stop to wait for me to heal; there’s still kids to take care of, and budgets to help manage, and hopefully a few friends to see, and I have to get help on all of those anyway.  We’ve got someone to help with the kids and house stuff, someone else to help with the budget managing (which we’re going over with the metaphorical fine-toothed comb in October), and I at least still have writer’s group most Sundays, which is work but has a nice social tone to it as well.  Once I left the hospital, the friend visits mostly dried up.  I recognize a lot of that is because the hospital was way more conveniently located than where I live, but I still miss the visits (and the friends, of course).

Speaking of writing, I’ve got an idea to slightly re-write another already-existing story for a market that just sounds cool, even though they only pay semi-pro rates.  At this point I need to be getting my name out there and worry about the pro rates when I can, but not obsess only on those markets.  I think I’ve sent out a story or two since I last reported on such conditions here on the blog.  I’ve written a new piece on the new project I have in mind, and participated again in Leah Petersen’s Five Minute Flash Contest this week (I haven’t been able to for the last several weeks due to doctor visit conflicts).  My two contributions haven’t been all that great, but the effort was made, and at this point getting back in that saddle is the goal, fine-tuning the quality comes next.

There’s probably a lot I’m leaving out, like what about the latest scans?  Well I talked to the nurse about them, but decided not to report until next week when I’ve actually been to the doctor and heard it from him, but sounds like more good news.  I’ve started my anti-estrogen drug tamoxifen, main noticeable side effect so far is the hot flashes are back.  Thankfully my doctor agrees with me that unless scans dictate otherwise, we’re waiting on the ovo-hysterectomy until I’m actually at a point that vaguely resembles “healthy”, so I won’t have to worry about that until sometime next year.  It would be a novel sensation to heal up from a surgery starting from a healthy point instead of at the brink of death’s door; I hope I get to try it.  Even surgical menopause might not be all that bad since chemo and tamoxifen will have put me most of the way there before the organs ever come out.

Oh, and my mom is doing the brave and smart thing and having her own prophylactic double mastectomies next week. (Meaning, she doesn’t have anything showing on scans but she has the same genetic flaw I do and it’s the smart thing to do BEFORE problems show up.)  So take a little of the good energy you’ve been sending me and toss it her way; since she IS getting surgery from the point of healthiness and it sounds like she has good doctors, she should heal quickly and well.  I’ll probably try to have a quasi-interview thing here on the blog with her about it at some point.

Now to quit hurting my arms by typing and watch a show until I pass out.  And take my overdue meds, they don’t help if I don’t take them.

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