A recipe for living with cancer.

Posts tagged ‘sunburn’

Killing an Ant with a Baseball Bat


I have finished radiation.  As with most things it dragged the first four weeks and flew by the last two.  The daily routine of getting up and going to the hospital first thing everyday with dread and resolve was quickly replaced with fatigue and painful skin and blisters.  But that too has resolved quickly drying, peeling and now itching much like a nasty sunburn from staying to long at the beach. 


I am through the major horrific portion of my cancer treatment and now have what one might call the “clean up” phase– Herceptin infusions to finish out the year and Arimadex for five years- like the clean up hitter in baseball.  Although not the most powerful therapy like the most powerful hitter in baseball, instead of cleaning up the bases, the therapy is meant to clean up any remaining cancer cells left floating around –a very important position in baseball you can win or lose the game, the same for cancer.


This is why I’ve questioned all along; is one truly ever cured of cancer?  Am I cured now since visible tumor is physically gone, chemotherapy drugs have coursed through every inch of my body and radiation has burned the local area to a crisp?  Or must I wait until the Herceptin is done and five years of Arimedex has inhibited every bit of estrogen left in my shriveled reproductive organs?  Or am I merely cured until it rears its ugly head again someday down the road when some tiny cells decide its time to divide and reproduce?  This is so random and sporadic it’s like trying to kill an ant with a baseball bat.  You may swing and hit and smash away at the tiny ants and think you’ve gotten them all; you may destroy a huge area where you see no more ants, but you will never get them all.  One or two little buggers dug down deep or were swept away from the initial area of contact…and they may pop up anytime, anywhere.  Cured?


There have been many articles of late on breast cancer treatment.  The most recent the New York Times article Our Feel-Good War on Breast Cancer, talking about how in the USA we over treat and are too aggressive with breast cancer, do unnecessary mammograms and in general are killing an ant with a baseball bat.


According to this article:


Many of those women are told they have something called ductal carcinoma in situ (D.C.I.S.), or “Stage Zero” cancer, in which abnormal cells are found in the lining of the milk-producing ducts. Before universal screening, D.C.I.S. was rare. Now D.C.I.S. and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. In situ cancers are more prevalent among women in their 40s. By 2020, according to the National Institutes of Health’s estimate, more than one million American women will be living with a D.C.I.S. diagnosis.


D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection: theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate. The thing is, in most cases (estimates vary widely between 50 and 80 percent) D.C.I.S. will stay right where it is — “in situ” means “in place.” Unless it develops into invasive cancer, D.C.I.S. lacks the capacity to spread beyond the breast, so it will not become lethal. Autopsies have shown that as many as 14 percent of women who died of something other than breast cancer unknowingly had D.C.I.S.


There is as yet no sure way to tell which D.C.I.S. will turn into invasive cancer, so every instance is treated as if it is potentially life-threatening. That needs to change, according to Laura Esserman, director of the Carol Franc Buck Breast Care Center at the University of California, San Francisco. Esserman is campaigning to rename D.C.I.S. by removing its big “C” in an attempt to put it in perspective and tamp down women’s fear. “D.C.I.S. is not cancer,” she explained. “It’s a risk factor. For many D.C.I.S. lesions, there is only a 5 percent chance of invasive cancer developing over 10 years. That’s like the average risk of a 62-year-old. We don’t do heart surgery when someone comes in with high cholesterol. What are we doing to these people?”


The key sentence here is:


The thing is, in most cases (estimates vary widely between 50 and 80 percent) D.C.I.S. will stay right where it is — “in situ” means “in place.” Unless it develops into invasive cancer, D.C.I.S. lacks the capacity to spread beyond the breast, so it will not become lethal.


I have invasive ductal carcinoma, which means my cancer probably started as a D.C.I.S. and developed into invasive cancer, it was not detected until it became invasive.  They cannot tell which D.C.I.S. will turn into invasive cancer, or why but had they found mine10 years ago and removed it, and maybe given me radiation: maybe I wouldn’t have had chemo and maybe I wouldn’t have had four operations, and maybe I wouldn’t have lost my breasts, and maybe I wouldn’t have been exposed to so many CT scans and MRI’s, and maybe I wouldn’t have lost a year and a half of my life and maybe it wouldn’t have cost the health system hundreds of thousands of dollars.  Don’t know about you but if I see an ant and have a tissue handy I’ll kill it, instead of waiting for lots of ants and maybe only have a baseball bat handy.


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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