A recipe for living with cancer.

Two bowling balls on my chest

Traveling with skin expanders should be no different from everyday living, right? Every time I fly I feel the expanders get harder as if they have had more saline injected i into them.  I know this isn’t true, I know the saline is inert and should not expand under pressure, but I swear, every time I fly, the next day I feel like I have two bowling balls on my chest.  They feel fuller and  more pressure than before, but this is not logical.  After just writing the post on hypochondria I should be able to say, it’s all in my mind, but it’s not, its in my chest and painful.  It doesn’t look bigger, the tension when you press on it seems the same, yet it feels different.  Could this be phantom pain?

UPMC recently called me and asked if i would participate in a survey based on my bilateral mastectomy and phantom breast pain.  I’d thought about this a lot since the mastectomy and had moments when I thought I was nuts.  Moments when I had the feeling of let-down associated with nursing a baby.  The first few times it happened was early on and there was still much discomfort from the surgery.  But later after most of the discomfort had disappeared I would suddenly feel that let down, and would look down, almost expecting the milk to start flowing.  The questions on the survey involved mostly itching and pain and I was surprised that someone else knew about this.  It still amazes me how much of a bubble we reside in during breast cancer…of course other people feel these things.  And of course you would, you just lopped off two very sensitive body parts and how could I not expect to have phantom pain?  The pain wasn’t the worst part, it was the itching–I will get this terrible itch and need to scratch, and when you go to touch it, you are totally numb, so scratching has no effect on the itch.

This is mind bending, having this incredible itch and having no way of effecting it.  But cancer and cancer treatment in and of itself is mind bending.  Removal of breasts, infusions of toxic substances, radiation producing blistering burns all in the name of healing.  And our bodies do heal, and our minds chug along behind trying to make sense of it all.   Someone called me a survivor the other day, the first time since this began.  I don’t feel like a survivor, I feel embattled, tired and confused.  Everyone marvels at my great attitude and how great I look, how upbeat I am.  And I am, unless I get off a plane I’ve been on overnight and feel two bowling balls on my chest.  Then I feel this is the confused time, the tired time, the time I may not be so upbeat.  But then my overnight plane ride brought me to Israel and I get upbeat again.  So big deal, two bowling balls on my chest, it’s only temporary, surgery is soon…then I’ll have something else to complain about!

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Post medical issue Hypochondria is a phenomena associated with any major illness.  Once you have had a heart attack, cancer, major surgery, or any accident you become hyper-aware of your body and it’s idiosyncracies.  Every ache, pain, twinge, pull, itch or mark becomes a major obstacle to be reviewed and examined.  I perseverate over every bump, lump and coloration near, on or around my bilateral mastectomy. Each time I raise my arm the skin pulls and the muscle is tight, but I do not run to the phone and call my PCP, or the oncologist, or radiologist. I wait, look again the next day, stretch a bit more to help the skin  and pass it off as nothing more than normal bodily changes caused by the barrage of therapies my poor body has been put through.  I do sometimes curse the therapies, the cancer and the lack of perfection (not that my body was ever perfect) but on the whole I am a relatively good patient with few anxieties but I do panic when I find a lump, I always have, because it could be breast cancer…and that one time it was.  Herein lies the irony, women are told, listen to your body, you know your body best, when something is not right you will know.  Therefore do I need to stop listening to my body after cancer because it will lie to me, trick me into thinking something is wrong?  Or do I just have to listen more carefully and evaluate more.

I also have the luxury of being married to a physician and if I am really concerned can bring him into the loop and posit the question, do you think this is normal?  And normal is relative of course.  The one area I have been remiss is this tingling in my arm and hand. This has gone on for about 6 weeks now and my personal physician says, get it looked at.

Last week was my final herceptin infusion.  17 infusions starting last July every three weeks.  It is an antibody so there are no side effects, and with my super nurse Barb I never had to worrying about the IV.  She is patient and methodical in choosing her vein, she doesn’t move quickly, remembers veins that have the little valve she got stuck on just once and quickly dispatches the iv and tapes it down.

But I digress, before the infusion I had an appointment with the PA for a checkup.  They do a cursory exam and ask you how things are going.  I mentioned a sore spot and the fact that I have had tingling in my arm and hand.  The PA immediately stopped the exam and sat down in the chair next to me totally exasperated. “Listen,” she said, “patients who have gone through what you have gone through have certain anxieties…”  I tried to stop her and say no, my arm…”no listen,” she interrupted, ” you are going to have anxieties about every little thing associated with your body.  You will think every little thing is a reocurance of your cancer and it is not.  You will worry about things that before you had cancer you would have ignored, and now you will think it is serious.  If something lasts for more than two weeks then you should call and come see us, otherwise don’t worry about it.”  Really?

I should have stopped the PA and told her to listen more carefully to me first, then talk, but I didn’t, I just wanted to get out, get my infusion get done and be DONE.  I will have anxiety forever.  I am not 100% cured, no one is, and that means someday I may find another lump or bump or discoloration, or puckering and I’d better follow-up with it.  And hopefully the person I go to will listen more carefully.

I went to the dentist this morning.  I have a tiny wire bonded to and behind my bottom front teeth to keep them in place.  This is a braided wire about the thickness of a piece of dental floss that over time, eating, brushing and munching frays and breaks and needs repair.  I was in need of some repair a couple months ago and missed my appointment for a fix and then procrastinated in making another appointment.  The wire continued to deteriorate and I found the offending wire carving a sore on my tongue.  I couldn’t swallow, eat, talk, drink or sleep without severe pain and only gained relief using that magical dental wax – GUM-not the chewing, the brand.   Most of us have had canker sores and can understand how a small disturbance in our mouth can make life miserable.

 

I didn’t realize the extent to which this had affected my daily demeanor until the moment it was fixed.  The procedure took 30 minutes to remove and replace the old with the new wire and in the process the wire egregiously poked my tongue one more time and made me bleed.  When done, with all the equipment, hands and cotton gobs removed from my mouth, the dentist said, “how does that feel?”  I closed my mouth, licked my lips and spontaneously let out a huge sigh of relief, my shoulders fell, my arms relaxed, my jaw slackened.  The doc and nurse laughed, “enough said!!” and I realized it takes so little to bring us down.

 

This wire with the tip the size of a pinpoint had consumed every waking moment without my recognition of the extent of the discomfort/fear. The wax did a fine job of covering the sharpie but I was always concerned about the wax coming off and the pain to follow.

 

On the way home from the dentist I felt so relieved and relaxed and then I started to think about my breast cancer.  Started by a microscopic cell with a mutation that kept it growing, it didn’t cause any physical pain or discomfort, but upon its discovery brought me down.

 

I haven’t written in this blog in a while, I’ve been busy and treatment free.  Yes I’ve had my tri-weekly infusion of herceptin, but that’s a piece of cake, 30 minutes and done.  I’ve been miserable with my skin expanders, but no one needs to hear more about that issue.  I have been exercising; back to eating vegan and traveling, lucky me.  I stopped taking my Arimedex because it was giving me horrific tooth pain and have yet to take another drug (procrastination is one of my big faults), which I will have to deal with sooner rather than later.  Reconstruction surgery is slated for October –which is scary and giving me nightmares– but is the end game of this process.  Do I no longer have anything to say…hardly, but not sure it belongs in this blog.  Although come to think of it, laughter and funny stories are what keeps me going so I need to rethink this.

 

Life is tough with cancer, without cancer, because the scary part, it takes so little to bring us down.

 

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.

My Mom had Faith

My Mom had Faith

 

I sit waiting for my Herceptin infusion and as always eavesdrop on the surrounding individuals.  I listen to the stories and there are so many stories.  There is a young woman in her thirties coming in every week for Herceptin and every other week for Taxotere.  A middle-aged woman sitting next to her has been coming in for Taxotere every week for six months and double doses.

 

The young woman talks about breaking this to her children for the second time….second time…children. She is bald and says the first time she didn’t lose her hair.  I can only assume that she is holding up as well as possible, the second time.  I think about the possibility of a reoccurrence rather regularly.  I am lucky to be post-menopausal and have a good prognosis but cancer is with me always.  I am reminded constantly with the discomfort of my expanders day and night.  During the day if I move the wrong way, reach, try to open a jar, try to toss food in a pan, I am reminded.  I am reminded with side effects, when I take my pills every morning –a headache, a hot flash or get totally winded walking up the small hill on Reynolds. I have faith I will eventually not think about this every day.

 

I am reminded when I think about my Mom and her cancer experiences.  There are two vivid images burned into my memory, one is of my mothers chest as a result of her radical mastectomy.  No breast, it was a concave landscape, scooped out with a few hills and valleys intersected by bright red, thick angry scars at random angles.  The second was of a little old lady after radiation, sitting slumped down and hunched over in her over-sized BarcaLounger.  Her shoulders folded in toward each other her chin on her chest, a gentle snoring coming out of her mouth.   Beaten and battered by treatment sleeping the sleep of the downtrodden.

 

The weight of the world hung around her neck on a gold chain.  On that chain were tiny gold balls and a variety of charms and items that held special meaning for Mom.  The most important was a small chai (Hebrew letter for life) charm that was her fathers. Over the years Mom would hold onto that charm, rub it and pray. I was never sure if her prayers were directly to G-d or her father.  But she felt a connection, a faith that her prayers would be answered.  She held on to that charm as she went through cancer.

 

Mom had a list of people she would pray for. Anyone ill or unhappy, troubled, were added to the list; the list ebbed and flowed, grew and shrank, got so big she would type it out and laminate it with tape so she wouldn’t forget anyone.  Additions and deletions, life and death, her belief that her prayers could somehow ease their pain, heal them, or give them solace.  Friends believed in her as well. They would call and tell her about people and ask her to put them on her list.  She has such faith.

 

Mom was not religious in the sense that she never went to synagogue, nor did she celebrate Shabbat, and as far as I could tell had no desire to go to Israel.  We celebrated the high holidays, Passover and lit candles at Chanukah. Mom had her own relationship with G-d and it did not involve religion, it was pure faith.

 

Mom held on to that chai more as she grew older. She recovered from her first bout with cancer and her second, she carried on and had faith and made it almost 20 years with cancer…she and I were and are very lucky.  I hope this young woman is as lucky and has faith in whatever she believes.  My Mom had faith and it worked for her.

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?

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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.

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