A recipe for living with cancer.

Posts tagged ‘radiation’

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.

 

X-rays

Radiation started two weeks ago and I have done a total of 12 of the 28 sessions necessary. I go every day Monday through Friday at 9:30 am for any where from 15 minutes to an hour depending on the day. Every two weeks is an extra set of x-rays to make sure everything is lined up and every Monday is Doctor day!  The first day I went through about 40 minutes of x-rays to give them a baseline, lying in one position and not moving.  They then asked if I’d rather stop and come in the next day for my first “dose” or could I possibly stay still for another 15 minutes.  My arm was already numb, my back sore, so of course I said, “turn up the music and go for it.”  There was a rather nice mix of tunes on the CD that day and I found I could get lost in it.  One down, 27 to go.

Before I started radiation I had a mold made, it is made of styrofoam, a balloon of sorts and once in position it is formed around me and used each time I will have radiation so I will lay exactly the same way.  They also measured and made markings with  sharpies so the physicists could figure out the exact position to point the x-rays to get my chest wall, clavicle area and lymph nodes.  After two weeks of therapy these markings would be replaced with a tattoo, a small blue dot in 6 spots so the beams can be lined up.

Radiation is intimidating in a different way than chemo was intimidating.  Chemo required 3-4 hours of my time and usually Tom’s every three weeks for 8 sessions.  The side effects were fast and furious as was the abatement of them towards the third week between doses.  I sat with an IV in my arm watching the witches brew drip into my arm and hoping it would cleanse me of the sins of cancer. A couple of weeks after chemo, most of the side effects were better and on their way.

Radiation on the other hand is every day, invisible and much more ominous.  We have all been told we do not want to be exposed to too much radiation anywhere in our lives, so we limit x-rays on our teeth, chests, virtually no one gets an x-ray unless really necessary, they can cause cancer. Technicians taking the x-rays stand behind shields or go in the other room and at the dentist this huge heavy lead apron is draped over your body.  X-rays are nothing to sneeze at!

So there I lay, a huge machine hovering over my chest then moving,  first the right side, then the left side, then right over top shooting x-rays.  The techs move in and out changing shields, putting a towel and plastic gel “diffuser” on my chest (I am so thin hahaha they don’t want the x-rays penetrating into my lung) and making sure the settings are correct all the way through.  The machine buzzes, clinks, hums and moves internally and then I hear the buzz and can see the large red lights go on the sign BEAM ON.  Eleven times the BEAM ON sign glows red, three long, 5-6 seconds and the rest short on and off.  I have memorized the pattern and know by the sign and the position of the machine when I am done, but I do not move an inch until they walk in and say “all done Barb.”

I lie there  overwhelmed, dismayed, frightened and disturbed knowing this is putting x-rays into my body.  They are cumulative and the effects will take longer to resolve than chemo, a friend told  me two to three months after I am done.    I would love to be a fly on the wall in 50 years when this room and this machine where I purposely get irradiated becomes a museum piece and the tour guide says…”can you imagine 50 years ago they actually irradiated people with this machine to cure cancer, barbarian, while today we tweak your genes and you don’t even get cancer.”

 

 

Just Pluck it Out

I went for my CT scan on Friday to “map” the area they will radiate or is it irradiate for my therapy.  The radiation therapist was terrific, efficient and supportive.  Instead of giving me one of those blue and white faded gowns, ties askew, nasty things, saying–take off everything from the waist up, open in the front… she took me over to a rack.  She explained there is a group of women who make these special velcro tops/shirts for radiation patients.  They look like a scrubs top but there are two velcro strips in the front, top to bottom, you simply strip off when you need to have your radiation.  They went from size XS up in lots of bright colorful cotton materials.  She said “choose one and it is your personal top, bring it home and bring it back with you each day for radiation.  Instead of the awful gowns, you’ll have your own shirt.”

What a pleasant change.  I put it on and she did her thing which consisted: on my back under the “machine”, settling my head into a scrunchy pillow, my head turned left, my right arm up over my head grabbing a handle, and then inflating the pillow around my head and neck.  This impression is how I will lay each time I come in for radiation.  She then measured and marked my chest with lines, arrows and dots in different colors.  These marks will be replaced by five tiny dot permanent tattoos exact placement which will be calculated by a group of physicists as to the exact spot to aim the rays.  Geez, if I ever wanted to get a tattoo it wouldn’t be five tiny blue dots, it would be something cool and awesome, maybe a burst of peonies, or a picture of Isabel, or me helping to cut up the elk in Jackson.  But what do I get– five tiny blue dots.  Maybe I can get them to do red…

I get my CT scan and figure in 10 days I’ll start radiation, 6 weeks and I’ll be done with it. Then I can go visit Marge in Florida, and or Revi in Wyoming.

I run a few errands and come home to three messages on my phone.  I figure they are from: Josh driving to a meeting (he always calls when he is driving somewhere), an automated voice telling me to switch electric companies (I get at least two a day of those) and the third would be a toss-up between an automated reminder of another doctors appointment for me or Toms reorder of his meds.  Oddly enough the automated voice that calls to remind him its time to reorder his meds is this lovely female sing-song voice that says…hellooo this is Curascript, its time to reorder your medicine… That is the sum total of phone calls we get on the house phone.  Reason to consider getting rid of that phone, but I like our phone number.  I am sure no one realizes, the phone number is 363-KLEY.  When we moved here the operator who set it up was a funny guy, tried to get 412-KLE-YMAN, couldn’t but said how about 363-KLEY!!

To my surprise and alarm there were two messages from the radiologists office saying he needed to talk to me asap, not a good thing.  I panicked and played the third call.  It was my breast surgeon, not her assistant, but she herself letting me know when they looked at the CT scan they saw…at this moment I held my breath and thought more cancer someplace else…and she continued, they saw the titanium clip marker in the lymph node under my arm. It was apparently not one of the sentinel nodes they removed  (they MISSED it) and they really should remove it before radiation.

Long story short, after discussions with both docs I need to go in to have this one node removed before radiation.  She said they would do it under heavy local sedation and just “pluck it out.”  After this minor surgery, I will need to let the scar heal and then go back for another CT scan and marking and then start radiation which looks like it won’t start until mid March.

How time flies when you are having fun, or breast cancer treatment!

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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