Strong Minded, Independent... Whatever

"She has been very recalcitrant in terms of going on any further systemic therapy,"
my surgeon, from her surgery report

At first I was affronted. That wasn't accurate, and therefore wasn't fair.

After all, I had made it clear that I knew I would eventually go on some form of hormone therapy (we won't talk about my flat refusal of chemo and radiation, although I consider my reasoning to be sound on this issue). I simply wanted to make one change at a time, since my history is one of adverse reactions to drugs, and I didn't want to confuse the side effects of one treatment with another. That isn't recalcitrance. That's just knowing oneself, and a desire to be in control of one's own life.

But, being me, I looked up the exact definition of the word.

Main Entry: re·cal·ci·trant

Pronunciation: \-trənt\

Function: adjective

Etymology: Late Latin
recalcitrant-, recalcitrans, present participle of recalcitrare, to be stubbornly disobedient, from Latin, to kick back, from
re- + calcitrare to kick, from calc-, calx heel

Date: 1843

1: obstinately defiant of authority or restraint

2a: difficult to manage or operate, b: not responsive to treatment, c: RESISTANT this subject is recalcitrant both to observation and to experiment — G. G. Simpson



Okay, then.

**from the Merriam-Webster OnLine Dictionary


Supergirl Gets Her Butt Kicked

I don't like surprises.

My son comes by his Asperger's Syndrome through a nice straight line from his grandfather to me to him. With me, one aspect of this is that I tend to research the heck out of things, because I want to be prepared - good or bad, I want to know what to expect. I pretty much know by now what I can handle; if I know it's coming, I feel I can endure it.

Before the hysterectomy I did my research, and the doctors did a fair job of telling me what to expect in terms of pain and functioning level and time to recover. I set my head at it, got it over with. Everything went more or less according to plan; except for a brief bout of infection, I got up and going fairly quickly, with only a modicum of depression and boredom and fuss. Three weeks or so and I was more or less functional again. One weird pulling muscle, and of course the hot flashes, but other than that I was back to normal within a month.

No Big. Wish I'd done it a decade sooner, reclaimed my energy and one quarter of every month. I am Supergirl.

Everyone said the hysterectomy is a harder surgery than the mastectomy. Reports from friends who had had mastectomies confirmed the surgeon's reports of a 2-week period of relative inactivity/recovery time. A kind survivor showed me her mastectomy up close and personal - I was actually reassured by that, it didn't look nearly as scary as I had thought it might. People talked about numbness and the drains and weakness in the arms and lymphedema and having to do exercises. I was prepared for that. I suspected that having a second major surgery in as many months would probably make the mastectomy a bit harder for me than the average. I might be more tired than most, take a bit longer to heal. I was prepared for that, too (for some odd reason, my surgeon didn't seem to be equally prepared for this likelihood, but that's a different story).

I knew that I probably wasn't completely prepared for the possible emotional impact of the loss... I have never had a friendly relationship with The Girls, so I didn't feel that I would particularly mourn their loss, but you don't really know how you are going to feel about an experience you've never had before, so I wasn't sure about that. I was prepared to unexpectedly mourn their loss (I haven't felt that yet, and may never do so in more than the nostalgic way one marks the loss of youthful skin and hair and teeth as one gets older).

But I thought that I had most of the contingencies covered.

I wasn't prepared. I wasn't prepared for how much harder it was to come out from anesthesia. I wasn't prepared for how thoroughly exhausted and sick I felt. I wasn't prepared for the toxic reaction I had to the antibiotics, which had me first thinking I had a bad flu and then made me increasingly dizzy until I was fainting when I stood up or tried to walk. I wasn't prepared for the drains to stay in for three weeks and to still be producing too much fluid by the time we were forced to take the drains out (I don't feel prepared for the needle aspirations that may be a result of that, either). I wasn't prepared for the pain; incision pain, of course, but I wasn't warned about the awful 'cording' - basically one of those horrible muscle spasms/'charlie horses' that you can get at night in your leg, but all across your chest from under one arm to the other, and it's there all the time instead of for a few minutes. I wasn't prepared for the level of mutilation - the huge swaths of folded swollen skin, the huge lumps and pits in my chest that show through my shirts/dresses, the huge (and permanent) lumps that suddenly appeared under my arms that keep me from being able to put my arms straight down at my sides.

Most importantly, I wasn't prepared for the burning, stabbing nerve pain that has stubbornly continued unabated since the surgery. Certainly I wasn't prepared for the nurse to tell me that the pain may very well be my 'new normal'.

So at first I was too exhausted and sick to write, and then I was too depressed and upset to write.

But I saw Dr. Bouncy yesterday, and although I have reason to believe that he is at times unrealistically optimistic about everything, I see no reason to believe the nurse's word over his at this point - and he is hopeful that the pain may abate with time.

Who knows. If the physical pain gets so that it isn't so bad, I may work up the energy and spirit to get used to having weird lumps in my shirts/dresses - certainly at this point I have trouble imagining voluntarily offering my poor abused body up for surgery on anything that isn't absolutely life threatening, although of course that could change if I turn out to be one of the lucky 5% that make it beyond the 5-year mark.

So that's the story. Physical therapy starts at the end of the month, and I am told that this may help with the 'cording' and the sudden weakness and clumsiness of my right (writing & spinning) hand.

Onwards And Upwards.


Brief Update

The surgery went well enough medically, if not aesthetically. I unfortunately had a very bad reaction to the antibiotics - which I thought for several days was the flu, so it took a while and increasing symptoms before we figured out the source and stopped the medication. Since then I have been feeling considerably better, and have been slowly recovering.

I had been hoping to recover more quickly, and to be less laid low by this surgery, but I guess the body does not take well to having two major surgeries in as many months. So I must take it slow and deal with the frustrations of the many limitations... again with the no driving and no spinning and no picking things up when I clumsily drop them (and those ballroom dancing lessons may have to wait...)!

Pathology report is back - unfortunately, it pretty much confirms what we already suspected, which is that it's an agressive grower that has spread throughout the lymphatic system and body. It will take a while for me to be able to have a talk with my oncologist about what that means for my treatment - I assume nothing pleasant.

But in the meantime, I will have a little while to just sit and recover, and to look forward to Shepherd's Harvest Festival, where I will have the chance to spend a bit of time with my fiber friends. See you there!!