A recipe for living with cancer.

Posts tagged ‘breast cancer’

Guinness for your health!

Our last official vacation night in Ireland and we have found a small piece of heaven. Driving out into the bucolic wonder of the Irish countryside Tom reminds me, “you are on the wrong side of the road.” But the road is barely wide enough for one car.  Stay to the left he admonishes, the left of what?  One lane and the sides of this country road are 8 feet high with grasses and vines and quite impenetrable.

It brought to mind Harry Potter in the labyrinth, looking in every direction, unable to find which way to go, hoping to find the exit. With no sight line, not sure how far we need to go and winding like a slithering snake had made the road, where would I even go should another car come at me?  We kept going and Tom kept muttering I don’t know about this Barb, we are in the middle of nowhere.

I found Carrygerry Country House on the Internet. G-d bless the Internet.  A young couple Niall and Gillian Ennis bought this old house, and then their adventure began. To say they will ever “finish” renovating is questionable, think of your own home needing a repair, on steroids!  They have done  a lovely professional job and it is comfortable, clean and enjoyable. There is also an award-winning restaurant run by the husband.
So back to our circuitous journey to heaven. Tom suspected this journey was never-ending, and if it did end it would be with woeful results I think he was certain our money was lost and we would need to find another place to stay the night.

Suddenly the grasses parted and there like Moses in the basket stood a jewel, Carrygerry Country House.
A huge antibellamish mansion surrounded by acres of farms, horses on the right, cows all around and a picturesque small lake in the distance. We rang the bell and were greeted by Niall, the owner and  she led us up to our room. Huge four-poster bed, antique chairs with marble top dressing table and a spick and span en suite bathroom. It was so far superior to our previous lodging I immediately felt my shoulders drop four inches and the stress of driving on the wrong side of the road for three hours evaporate.

I walked the grounds met some of the horses and enjoyed a delicious breeze. There were two gorgeous horses in one field and I walked over to a sign that read: THOROUGHBRED HORSES KICK AND BITE.  In other words, leave the damn horses alone, so of course I went over to them!  A male and a female, the female came over to check me out and as I talked softly she put her head over the fence and I pet her nose.  Zelda loves horses so I’d put the video on and captured it all.  There was an electrified line around the top of the fence and the curious lady inched toward it.  I kept telling her no, no, don’t touch that and she sniffed just a tad to close, got shocked and bolted out into the field.  Not sure whether that line was actually for the horses, or the humans, for had I leaned on the fence and draped my hands over, I would have bolted as well.

I decided to explore the house and was immediately taken by photos of the chef and his two young sons working in the kitchen. I am a sucker for kids and chatted with Niall about the boys and how rambunctious they can be.  She asked if I’d like anything to drink… I have been jonesing for a Guinness all day while driving. I have never been a Guinness drinker but have found a real enjoyment of it while here.  A (wee) Guinness would be great I said. She poured me a glass or 1/2 pint.  She slides down the lever and releases a cascade of white foam to fill a glass, this she sets aside. Then she does another pull and fills the glass with white foam exactly, precisely, and with grace that says she’s done this many times before– to the rim, not a drop overflows. This she sets aside and waits. The bottom of the glass starts to turn dark and from there up a firestorm of activity, a collision of molecules so simple yet complex is mesmerizing. The storm clears and there sits a chocolate-colored elixir topped with a perfect layer of nutmeg colored creamy foam. Done right and the layer of foam will last until the last drop slides  gently down your throat.

When finished the sides of the glass are painted with foam with a modern artists rendition of life’s fullest delight and deepest sorrow. The delight of the first cool sip producing an invisible foam moustache to sadly the last with its promise of more to come.  I am so glad to be alive, to have survived breast cancer so far, Guinness for your health, cheers.photo-2photo-3

Panic

I panicked the morning of our trip to Ireland.   I rarely panic before a trip and I  have traveled a lot before my breast cancer.  I don’t love flying, the bumps and jolts and noises the engine makes going through its motions makes me hesitate and listen and worry for a moment.  High pitched whines suddenly change to a low moan.  Did the engine cut out, why does it sound like we are slowing down, was that the landing gear crunching like that, is that normal? Then I remind myself when the plane door shuts I relinquished control to the pilots, flight attendants, the weather, fate and perhaps G-d.  I do hate and panic during turbulence, but most do and when the flight attendants look calm and continue walking the aisles I release my vice grip on the arm of the seat, or Tom’s hand if he is sitting within reach.

I panicked for this trip because of a small card which I did not have.  I am very focused when I travel abroad, medications, ointments, tinctures, trappings, band aids, the right socks, a snack, gum, mints, you would think I was traveling to the depths of the Amazon not Ireland.  I just find when we need something, to have it on hand is so much easier than to try and get it.  Because whatever it is that we need, it is usually 3 AM when we need it.  Have you ever needed an antihistamine or preparation H at 3AM?

The card I was missing was a disclaimer card from the company that makes the skin expanders from my breast surgery –explaining that I have two magnets, one in each breast.  If the metal detectors go off, I get pulled off to the side, i raise my arms and get wanded and I still beep, before they take me into a room and I get strip searched and who knows what else,  what do I do to explain?  Sure lady you have a magnet in each breast. I whip out this “get out of jail free” card and all is well.  The doctors office was “out” of this card and the nurse said she would get more and send me one.  I called to remind her but never received the card.  I meant to call again but got side tracked.

I was dropping Sophie off at the Golden Bone Kennel when a bolt of lightning hit.  The thought just exploded as if a laser shot the idea into my brain.  I don’t have the CARD. Why did this suddenly come to me and what triggered the memory? No clue.  But I immediately panicked.  Throughout breast cancer therapy I have maintained my breasts have not been the focus of my sexuality, I am more of a leg person.  If this upcoming surgery is unsuccessful I have already decided to be flat.  Were it not for Tom I would already be flat, or so I thought.  As I panicked the thoughts racing through my mind were quite telling. What if the sensors go off, what if they wand me and it goes off, will I be taken in a back room, will I have to undress, will they touch me, would they only believe me once they saw the 6-8 inch scars on my breasts? I started to cry.

On this trip I will go through security four times, four separate flights, oh the inhumanity. Tom, ever calm, said don’t worry there is nothing we can do about it anyway.

We get to security and  I went through the revolving door machine, you know the one, stand on the yellow footprints, put your hands up just like this hysterical graphic in front of you…3 seconds, then get out and step aside.  The woman said wait here since the film (showing my age–image) takes a few seconds to develop –then she says I have to pat this spot.  I turn around and there was a yellow square on the icon right above my left breast.  I start to explain, cancer, expanders, magnets and pull my shirt aside and she says, no no I just need to pat this spot. She pats below my collar bone right on the top of my breast. Says its fine and then says, those things don’t usually trigger the machine…. hmmmm you are fine go on.

I momentarily forgot I am one of thousands with different stages of breast cancer therapy who walk through these machines.  Thousands who are worried, upset, angry, depressed and grateful for recovery who may need to stand aside and wait.  We beep, we ping, we stand aside, we wait, we are accustomed to waiting for results.  We hope for the best and to be told we can go on.  I have three more times during this trip to see what happens, will I beep and need to wait.  And there are more trips in my future.  Much like breast cancer I will need to wait to see what happens, but tonight, tonight I get to taste my first real Guinness in Ireland–we’ll worth the wait.

To Be Brutally Honest…

I have had time to calm down about my lipid levels.  After two days of being a strict vegan, eating no sugary products (cookies) and drinking no alcohol, I have honestly looked at the last couple months and my eating patterns.  And I have to be honest with myself.  Yes over those months I have been getting back to being a vegan or veganish (a vegan who eats fish!) and yes I have avoided dairy most of the time.  But when we go out to eat I will often have a veggie wrap – it has cheese , or a salad-it has feta, sometimes parmasean, or cavitelli -made with ricotta -so there have been many times when the healthy vegetarian option I am eating has fat in it.  We stopped eating at Dinette, my Hubbie’s fav restaurant, because there was nothing I could eat there when I was being strictly veganish.  I once ordered one of their pizzas without cheese…oh my…cardboard.  So in the past couple of months we’ve gone back there and I’ve eaten the pizza with cheese, but only a little, HA!  What was going on?

I was entitled.  I have breast cancer and made it through chemo, surgery and radiation and — well, I deserve to eat some stuff.  I maintained my weight, was feeling great, so my cheating, if we can even call it that, was not only justified but helping me get back to a normal life.  My chocolate cookies may also have had a bit to do with my LDL and cholesterol increase.

In the last two months I have perfected my vegan chocolate chocolate cookies (my son has named them “the cookie from heaven”).  And to be honest, I have eaten at least one every day for probably a month straight, some days more. One must taste test in order to ensure the product is worthy!  Even though vegan, there is sugar and a small amount of fat, but small amounts add up.  And sugar is one of the culprits that will increase LDL.

But how could I resist these cookies, part brownie part cookie and vegan ?

cookie

Or these my son made?

IMG_2225-1

Here is the recipe in case you’d like to try them:

Triple C-Chocolate Chocolate Cookies

or The Cookie from Heaven

In bowl of mixer Cream until fluffy

6 T room temp vegan margarine (I use Earth Balance)

scant 1/2 cup white sugar

scant 1/2 cup brown sugar (scant just means don’t fill to top)

Add to bowl and blend:

4 T applesauce

In microwave melt:

1/2 cup dark chocolate (I use El Rey 70+%)

Add 1/4 cup good cocoa powder and mix directly into melted chocolate

Add chocolate mixture to bowl and blend well.

Add to bowl:

1 cup minus 1 T APF (all purpose flour) If dough to stiff, remove another T next time.

1/4 tsp baking soda

Blend and add 1 cup chocolate chips/chunks or bits.

Scoop a walnut sized ball for 2″ cookies.  Place on parchment covered cookie sheet and bake at 350 for 8-12 minutes.

You want these cookies to be set but still soft in the center so depending on your oven it can take anywhere from 8-12 minutes.  This makes about 15 3″ cookies or 24 2″ cookies.

I have added extra white chocolate chips to the batter, also walnuts.  I love nuts and walnuts are so healthy and have good fat and not in a chocolate cookies would be even healthier LOL!  The cookies are very delicate when hot out of the oven but once they set they are between cookie and brownie.  They freeze well and taste yummy frozen too!  So to be brutally honest, I know why my cholesterol and LDL levels went up, but I sure enjoyed all those cookies along the way! Now, moderation.

But I Feel Good

Two weeks ago I chipped two teeth and visited the dentist. Then I woke up with liquid coming out of my ear and ended up at urgent care and the next day at the ENT. I had a hole in my eardrum and had lost some hearing.  They had no clue how it had happened, maybe it had to do with chemo, radiation, or all the coughing -allergies gone wild-who knows?  Falling apart bit by bit  but I felt good.
I finally stopped coughing (about six weeks), my allergies were better but still there– but keep in mind I felt  pretty GOOD.  I had my annual physical Tuesday with full blood work to check my lipids (everything looked good she said), and my Herceptin infusion and visit with the Oncologist on Wednesday. I see the plastic surgeon next Thursday and the breast surgeon the week after that for a general check and to measure my arms for lymphadema, and then just for sh-its and grins my colonoscopy in two weeks.  I feel great but to look at what’s happened in the last few weeks and all the appointments one would think I am falling apart piece by piece.
Finishing chemo was huge, radiation even better, but I am not done yet–but I feel good.
I am now taking the Arimadex (estrogen sucking drug for 5 years)  and have to watch for side effects: aching (apparently bad enough the Oncologist said CALL me immediately if this happens); menopause side effects may return, please no; increase lipid levels which I thought would be no problem until my blood work came back. Oh and bone demineralization which I will now be on fosimax to counter.  The side effects from that…I won’t go into those.
But I feel GOOD physically,mentally though I am a little annoyed, concerned and ferclemped and fa–mished.. Here’s a topic, fracking in southwestern Pennsylvania, talk amongst yourselves.  For all you SNL fans.
What is upsetting me is my lipid levels, they are HIGH.  After two years of being a vegan and bringing my cholesterol down 55 points to healthy and LDL to normal range…I am now 85 up on cholesterol and in the high range for LDL.  I have not been a vegan for the last year but didn’t think I’d been so bad,  For how high it is I should have been eating red meat, all meat, cheese, butter, ice cream, lobster, sugar, alcohol and a Big Mac once a week!  The annoying part in all this…Arimadex causes an increase in, you guessed it, lipid levels. I have six months to try my vegan diet to decrease my numbers again, get retested and see what’s what.  The caveat is — if they do not go down, then the question will be is it the Arimadex?
Then I will have to….oh never mind
I do feel GOOD!

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.”

 

 

Surgery

What is there to say, I have an unexpected surgery tomorrow. The surgeon forgot or missed the lymph node with the titanium marker from the original diagnosis. I could leave it in but there is still cancer in the node and why leave any cancer that we know of in my body. It should be a quick surgery but I am still anxious. Quick or long, the preparation process for surgery remains the same, pre op exam, blood work, no food after midnight, no meds, and get up early and wait. I should be out of surgery in an hour and home by late afternoon.

My niece on the other hand goes in for surgery on Friday and faces 8-10 hours. My prayers and good thoughts are with her and the family and I hope their wait goes quickly and is I uneventful.

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