Sep 13 2011

rough week, sloooooowly improving

Well I took a short break from PT these first two weeks post-surgery; I just couldn’t make myself keep getting up and pushing physically when I was already pushing mentally and emotionally to heal, heal, heal, keep watch on house management, help The Teen figure out a better after school strategy in the midst of a surge of attitude and angst, hurt hurt hurt, figure out writing kickstarts, wait for shoes to drop, heal and hurt, hurt and heal.  It probably wasn’t the best choice; keeping moving and exercising really is one of the better and faster paths to health, but I just ran out of self-push on that front.  Spent it all elsewhere.  I’ll be slowly starting back on it this week, but carefully, of course.

Today I went into the surgeon’s office for a follow-up, and of course, not as fast a healing as I’d like.  Well, I was warned about twice the healing time for this, plus less activity I’m sure hasn’t helped.  But there’s nothing terrible happening, just slow healing.  I had half of the staples removed on half of my right side (heh), and half of the staples removed on all of the left side (every other one).  I was told that it’s looking really good, even though it’s still producing quite a lot of fluid and is swollen, so none of the four drains came out. (A mixed blessing; it would be nice to have healed enough for drains to come out, but as I recall, that hurts, quite a bit.) I actually think one of my JP drain suction cups has a leak somewhere (based on something that happened tonight), I’ll get them to take a look tomorrow.  I have another follow-up a week from today with this surgeon, I expect at that point I’ll get at least half the drains out and switch from staples to surgistrips.  He also told me to use hydrogen peroxide on the drain openings, which continue to hurt more than most other places on my chest (the swollen areas under my arms are a mix of numb and big hurting).  The backs of my arms are also really painful and swollen, so we’ve been wrapping them to try and keep the fluid draining out and toward the center of the body.  I have gained by far the most weight and am the heaviest I’ve ever been, due to the summer’s inactivity and the steroid drugs I’m on; however the good news is I’ve already lost 30 of that in the last two weeks (mostly fluid, though 8 pounds of it was breast, hehe).

I have another appointment tomorrow, this one a big one with my favorite oncologist, the fabulous Dr. Carlos Rubin de Celis (for anyone looking in the Austin area, I’d commute to follow this guy and keep his services, that’s how good he is).  I get some lab work done, I think we’ll be scheduling some scans; it’s time for the monthly medication renewal so we’ll also be discussing that.  I had been starting to ramp down on pain meds but the surgery pushed me back up to where I was, and in fact I’ve been using a few more of the pops than before.  I think it’ll be ok; he trusts me to pay attention to my body and tell him what’s going on, and I trust him to listen and help me change and stay on top of things as needed for best pain management; it’s a good arrangement.   We have a plan for how to affordably start me on tamoxifen (an anti-estrogen drug) that we’ll be discussing tomorrow again to make sure it’ll work the way we think it will.  I’ll also be receiving my next Aridia infusion.  This is a bone treatment that he says I’ll be on once a month for the next two years at least.  It’s designed to both prevent any future cancer encroachment into the bony areas that were previously affected by the metastases, as well as help assist in the healing of those areas previously damaged.  I’m not sure about how Aridia itself affects my body, side-effect-wise; I probably won’t have a clear picture of that for the next couple of months as it’ll be all mixed up in the mastectomy healing process, but I’ll keep reporting what I notice, when I do.  I’ll learn more about tamoxifen side effects tomorrow as well.  A walking pharmaceutical package, that’s me for the long term, I guess.

Realistically, I’ll ramp down from the pain meds over time, we hope; the damage is still very much there but there’s good reason and hope to believe that it will lessen over time even if not go away entirely.  My mom and I even came up with a clever solution with the help of a nurse for weaning off the pops when the time comes. (I don’t have an addictive personality, but recognize that habitual behavior is its own thing, so I’ll switch to mini tootsie pops or dum-dum pops when I feel the habit but don’t need the drug.)

(TMI warning) One concerning side effect that continues is near-incontinence; I have a much shortened time warning on when I need to urinate, especially when waking up.  This is likely from the radiation, and the RadOnc believes it will fix over time; she says that for those whom it’s permanent damage, it happens during the day as well.  While I’ve had it happen during the day, it’s always when I’m concentrating too much on things like writing, and ignoring the early signals.  If I don’t ignore the signals, it’s not a problem, so the daytime stuff is my own fault and I just have to wait for the nighttime stuff to heal itself over time.  There have been very few accidents thanks to the bedside facility, several close calls and only a handful of missed ones.   (Tonight for example, woke up fine and no misses! yay)

I’ve also had some radiation recall come up, which is skin irritation and/or discoloration (in my case definitely irritation, bah) that is exacerbated by the time spent in bed, so that will hopefully lessen as I get up and moving around more again.  This most often happens when you have to have extra radiation treatments, which if you recall I had to get a second round of 20 radiation doses while on chemotherapy, a scenario they try to avoid when possible due to just such side effects but which was necessary in my case.

This coming weekend links post has some cancer ones in there.  I don’t like to think about the death aspect of it, how close that sits over my shoulder, even though realistically I know that death sits no further away from any of us, really. (Wildfires, car accidents, random violence, anything can snap out that light much more immediately than what I’ve fought off twice now.)  I hope that my loved ones can all continue to treasure my presence and what I give to their lives by being in it; the more I heal the more I have to give, the more I love to give.  The healthier I am, the more I can do and the happier I’ll be, and I hope my friends and family can believe in me along those lines, that you are all so important for me to have and hold and love and lust for and live for.  It’s been a vicious and long road, with no promises there won’t be future sharp rocks along the way, but I’m passionate and dedicated to the ones I love and I WILL keep climbing those rocks.  I look forward to feeling your supportive presences alongside me as I do so.  Patience is one of the hardest traits to keep hold of during these crises and healing times, and sometimes even I want to scream   at the universe for a fucking break already.  Having you there with me makes such a huge difference; even if we’re screaming at the unfairness of it all together, that “together” is what makes it so much easier for me to keep going, keep healing, keep surviving, keep thriving.

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