4/17/09

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.

7 comments:

Ellen said...

Eileen, whatever hits you, you manage to deal with it. You are not supergirl; you are SuperWoman! With all the prayers and healing thoughts heading in your direction, I'm confident that you will make it through this ordeal. Gram used to tell me that God only gives you the crosses you can bear; maybe She thinks you can bear more than most. That being said, I sure hope you are done being tested.....Hugs & love, Ellen

Glorious Hats said...

Definitely sending good thoughts and burning candles that you find yourself in that 5%

Your course sounds very painful and challenging.

It seems hopeful that you are at least able to write about it now.

Hugs, Jane

The Violet Hoarder said...

What you and your body have been through boggles the mind. And the future is uncertain. But think how far you've come. Remember the first day? The first week? All the fear, the unknowns, the wrong doctors, the things they thought that weren't true, the surgeries to plan for? Sometimes to see where you are, you have to look back to where you started. Your body may not please you right now, (Whose does after 50? I barely recognize myself these days.)but you have one of the brightest shining spirits I've ever encountered. And that's WAY more important. That's what's going to see you through all this. That, your family and friends, and all of the other spirits who wish you well.

Nancy K. said...

I wish I could say something to make you feel better, but know that there is nothing I can say. So instead, I send you prayers and good wishes and great big cyber hugs and say THANK YOU for sharing your very personal, painful and private battle with us...

mrspao said...

Hug x Thinking and praying for you.

xxxoooooxxxx

Lindsay said...

I have been following your blog for awhile now and have been trying to work up the courage to give you some information. These situations are always so delicate and one can't imagine what you are dealing with right now without having gone through it personally. It has been nagging at me and I finally decided to just do it. http://www.gerson.org/ You may or may not have heard about the institute before, but I always hear hope when I read Dr. Gerson's books or watch their documentary. The therapy is stated to not just help with cancer, but also dissolve scar tissue(not to mention aid in a host of other illnesses.) I am currently in the process of trying to get my 22 yr old sister who is suffering with a debilitating case of Lyme Disease (keeps her on morphine, nearly bedridden, and at a scary 98 lbs.) into one of their institutes (we don't dare travel with the H1N1 virus right now) Anyway, I just thought I would pass along the info. I have no direct affiliation with them. I stumbled upon their documentary when I was home sick with a kidney infection and a slave to my TV.

Sending you continued prayers and thoughts of hope.

Meredith & Mike said...

Wow Eileen, I really don't even know what to say to this post. I've am speechless. I find it horrifying that you and many others are dealing with all of these challenges.

Thought much like Glorious Hats, it is encouraging that you wrote about it. If you are writing, this are still on the up and up. :)

Has the cording lessened at all?

Meredith