A recipe for living with cancer.

Posts tagged ‘control’

Out of My Control

Tom needs a haircut.  I know this because I can look at his hair and it’s getting a bit messy and long and a bit uneven.  Duh.  When I suggested he get a haircut this week he said he was to busy, he’s going out of town, and he’d try to get it done before surgery next week.

I stopped and thought OMG it’s next week.  Totally consumed with this surgery for the last 10 months I was surprised when a slight shiver when up my spine when he said, next week.  A gnawing sense this is unmistakably a huge decision layered with all kinds of self doubt, self worth and self confidence issues has not been lost on me.   Once again I am in a situation where I have no control.  I have done everything I can to be physically fit and healthy for the surgery, gotten everything in order at home-  OK, not the office, the office is still a mess- and should be fully prepped and ready to go. Stand like Wonder Woman! Be bold, fake it till you make it.

I have been behaving like a pregnant woman during her last month of pregnancy, nesting.  Getting everything ready so we don’t have to think about or worry about things during my recovery. Control, huh.

Get the furnace its seasonal service- check; get the water system outside buttoned up for the winter, check, no un-check missed the guy, reschedule; get a new cleaning lady, check; get out my winter clothes and put away my summer, check; get out winter blanket, check; prep garden for winter, check; bring in last of seasons harvest, almost check, there is still some oregano and thyme out there. I even cleaned the two year buildup of dust and dirt around the motor of the refrigerator.

I have scheduled a cookie baking night and the kids are coming for the weekend and will help with a few other things on my list, so we should be good to go.  I think I am ready, out of control, but ready.

Mom always said do not waste your energy worrying about the things you cannot control and this last year and a half has been one long -out of my control- journey.  This is the final leg and once done I can redirect my energy and thoughts to other things.   Right now, Tom needs a haircut.

Control lost, Control given

I am done being depressed.  First of all its no fun, it’s depressing, second I hate a pity party, especially my own and third it accomplishes nothing.  I saw two docs this week and did not get the outcome I wanted, the control I wanted.  I wanted to have the reconstruction and mastectomy done at the same time, then radiation and be done with it by the end of March.  If there was any skin deformities from radiation I could deal with it and the miracle of plastic surgery could tweak it, fix it, correct it and be on my merry way.  No matter who I speak to radiation is a breeze, “you might be fatigued but that is it,” “its nothing compared to chemo,” “the hard part is done.”  Great it’s so easy and virtually side effect free then why can’t I Control my own destiny –damn cancer!

The plastic surgeon was totally honest with me and said he most likely could not fix any damage done after radiation to an already reconstructed breast.  I swear he told me the last time –he would do the reconstruction and then deal with whatever the radiation did to the skin.  This time he said: “you’d probably have some shrinkage and pulling of the breast and it would be very asymmetrical and you would even see it in clothes.”  Now that picture stopped me cold, it’s one thing to be a little lopsided but I am just self conscious enough to know I do not want to look that way in clothing…I’d rather be boobless!

He of course would do what I wanted, because in fact we do have the final word on what we want, can say yay or nay, walk out the door, find someone else,   but he would not guarantee me anything.  I don’t want a guarantee…I want control and to be done with this.  No, the truth is I do want a guarantee, I want it my way and I want perfection and I want a miracle performed.  Because that is what we all want.  We see so much on TV, magazines, the internet of what is possible, things docs do is AMAZING and perfect and transforming.  We are blinded by the aura of perfection we have simultaneously watched and longed for, foisted upon us by marketing manipulators who practice our every step and direct us daily.  And final say, we have the final say after they paint a picture and manipulate us to the point of caving in…I wish I had recorded the first conversation.

I wish there was not this feeling of standing on the railroad track with the engine bearing down on me.  Three lines sit in front of me, if I move to one I know the engine won’t hit me, I move to the second  the engine probably won’t hit me and the third I know it definitely will hit me.  It’s like cancer…staying with the treatment protocol and its timing (surgery has to be 4-6 weeks after chemo, don’t want the cells to grow), radiation needs to be 4-6 weeks after surgery and pills for 5 years), we know this works.  Go get a second opinion, time is flying, more tests, maybe the same protocol, and we probably will have the same outcome, but we are not sure and third do nothing…cancer wins.

Every survivor I talk to says the same thing to me…”you will be fine.  The chemo is done, that is the hard part, I don’t remember having any issues with: neuropathy, numbness, oh yes my hair grew in quickly, and my brows and eye lashes, hmmm radiation, no I was just tired.”  Most seem to have blocked out everything either refusing to remember because it is to painful or chemo brain has done its job.

Women who have worked through all of this are better off, to have some other focus besides your body being twisted and tortured.  I guess I want to bear witness, yes this is going to cure me, but at what cost and is there a better way?  Excess exposure to radiation is known to cause cancer; lets not quibble about all I’ve been exposed to in my life, or the past 6 months, and I have to go through six weeks, every day.  I am sure they will tell me it’s a small amount and localized…compared to WHAT?

The truth.

I joked about waiting for my eyebrows and eyelashes to grow back with the anesthisiology nurse taking me to the OR.    She told me she’d gone through breast cancer over five years ago and her eyebrows have never really grown back.  An honest answer.  My friend Linda freaked after week five of radiaiton and told her radiologist she was done, she could not take another day of radiation.  It hurt, it made her exhausted, no more she told him…an honest answer.  If radiation is not so bad, easy they tell me, nothing compared to chemo, then how does it cause so much irreparable damage to the skin and breast area that my illustrious plastic surgeon cannot fix?  “you’ll just have a sunburn, the skin will harden and shrink and you may be fatigued.”

Sunburns hurt and blister and peel and damage the skin…skin cancer; skin hardening and shrinking cannot feel good and fatigue, well I will give them that one, I know fatigue. Once again I have given control over and hopped back on the cancer cure train.  Stop four, bilateral mastectomy with skin expanders; stop five, radiation; stop six, six months down the road, reconstruction surgery; stop seven, jump off and take your herceptin and arimadase inhibitor for 5 or maybe 10 years and we will call you cured.  I used to like trains- not so much anymore.

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