A recipe for living with cancer.

Posts tagged ‘breast cancer’

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.

Gat Wal Soon!

photo-39

The first day out of surgery Miriam shows up with cards from the kids.  This Zelda wrote completely on her own without asking for any help.  Worthy of framing!!

The story I mentioned about IV’s…In the old days when Tom went to Medical School, medical students were thrown in to the fray and learned how to do everything starting year two (correct me if I am wrong honey).  They practiced giving shots, IV’s, all the stuff necessary to take care of a patient just in case you were the only Doctor available on Gilligan’s Island.  The Professor and Maryanne were good, but a fourth year medical student could have ministered to all of their needs, back in the day.  Today’s students are a different breed entirely, not given as many opportunities because of specialists, nurse specialists, PAs, nurses and IV teams!  To be the first guinea pig on which a newly minted medical student tries to put in an IV, not where you want to be.  However, Presby, Montefiore, Magee, all teaching hospitals and one of the benefits is the talent it attracts, but also the ability for new students, interns, etc. to learn.  Someone has to be your first.

When I went in for the sentinel node biopsy there was a medical student with the anesthesiologist.  He asked if the medical student could put in my IV and I said sure, they have to learn and I should help just as everyone else should.  Keep in mind I still have 8 IV treatments to go and need to not blow out any veins or lose possible sites for an IV or they would need to put in a port.  I don’t care who does that, its something I do not want to have!

Tom jumped in and said, NO WAY, she needs to keep all of her veins in tact.  Then he asked how many the medical student had done…this would be his first.  Tom turned to the medical student and said, “sorry, she needs all her veins for chemo and we can’t afford to blow one.”  The anesthesiologist, I felt almost begrudgingly, put in the IV.

Comes pre op for my mastectomy and in walks a young man and introduces himself as a nurse anesthesiology student and he is here to put in my IV.  I said, sorry you can’t put it in.  The pre op nurse comes over immediately looking very upset and says, “oh dear, you must have an IV to do the surgery.”  I said, “I know that but HE can’t put it in get me someone else!”  I thought I was so smart.

Tom jumped in once again, “no Barb he can do it he’s not a medical student he is a nurse anesthesiology student and has to be an RN before he can do this.” Man I thought I had this all down!

I asked how many he’d done…he said 40 -50 as a student, but he’d  been a nurse for a while. He said,”I’ll make a deal with you, I get one shot and if I can’t do it I’ll have someone else come in and do it.”  He did a fine job.  But medicine is certainly confusing.

And one wonders why Obamacare is 900 pages and complicated, you need a playbook for everything, setting up surgery, morning of, letting the patients know, pre op, surgery, post op, floor care, nurses, aids, dietary, it’s remarkable.  When I get the bill I am astounded by the cost- I/we must not forget everything that had to happen to get me to surgery, and successfully through surgery and the number of people who touched me literally and figuratively. Lets not even consider all that has transpired to get me to this point.

All the people who I interacted with in the 24-48 hours surrounding my mastectomy:

Scheduling/coordinating surgery: 2 people; morning of surgery: 8 people; surgery I can only guess: 10-12 people; recovery and transport to room: 4 : in the room: nurses, residents, interns, medical students, post doc and aides: 16 that I saw, this does not count anyone behind the scenes in the pharmacy, kitchen, housekeeping, pathology,etc. Discharge and transport: 2.  In 16 1/2 hours  42 people took care of me and those are only the ones I remember.  Those 42 people took me safely through this surgery and one more step to survive breast cancer.  Sure medicine is messed up financially and could use some reworking, but 42 people…whatever the cost it is worth every penny.

Thank you to each and everyone who helped me and also to those I did not see who I know were essential to the entire process.

The Rare Purple Owl

The rare purple owl in Jackson, WY recently seen trick or treating.  If this peanut doesn’t keep me going on chemo…she was here for a week and was more restorative than anything.  Between she, Zelda and Oz and the kids, friends, I am a very lucky lady…Tom and Sophie too!

Taxotere

The next drug I am taking is Taxotere so I went back and looked at the information sheet they gave me in the office.  I am a bit nervous but everyone I talk to says this one is so much easier than the first two drugs which are “really bad”  in comparison.  The list of side effects (listed below) are pretty much the same except for the last five…those are new.  So think good thoughts for me not to have those last five.  I’ll let you know!

Here are some of the interesting points about this drug….

Docetaxel injection is used alone or in combination with other medications to treat certain types of breast, lung, prostate, stomach, and head and neck cancers. Docetaxel injection is in a class of medications called taxanes. It works by stopping the growth and spread of cancer cells.

And as to side effects:

  • nausea
  • vomiting
  • diarrhea
  • constipation
  • changes in taste
  • extreme tiredness
  • muscle, joint, or bone pain
  • hair loss
  • nail changes
  • increased eye tearing
  • sores in the mouth and throat
  • redness, dryness, or swelling at the site where the medication was injected  or
    • blistering skin
    • numbness, tingling, or burning sensation in the hands or feet
    • weakness in the hands and feet
    • unusual bleeding or bruising
    • nosebleeds

    Let the fun begin.

Gamblers, Heros and Survivors

How can you understand what chemo therapy is like unless you’ve gone through it? After lots of time to think about this and still more to come I’ve come up with an equivalent that might ring true to people lucky enough not to experience it.

Think about the worst illness you’ve ever had, lets say a really bad flu that lasted a week and when you thought you were better you had a relapse.  The aches, the fever, the chills, the vomiting, etc, not being able to eat, light bothers you, you can’t read or watch TV, you just want to curl up in a ball and have it over with.  Then even when you are done you feel weak, washed out and want to sleep for another week.  OK have I set the stage?  Now think of that illness and realize that once every three weeks for a total of 8 times, you have to go through it again.  You have no choice, you know exactly the day it will start, you know exactly how bad you will feel and you know there is nothing you can do to stop it.  Add to that the knowledge that each time it will take a day or two longer to recover and you may get another symptom, like an infection and you need to add a stomach wrenching antibiotic, or your nail beds will turn black, or your hair will fall out, or your mouth will be full of sores and even though you may want to eat you cannot.

This is what chemo patients are given, a schedule of pain, discomfort and hardships and as many tools as possible to deal.  I have never before understood the bravery of all chemo patients, the intestinal fortitude it takes to go through this, the sheer will to know exactly what horror to expect, and to continue to sit down in that chair with a smile without screaming “what am I doing here” and running out the door.  I am just starting to feel better today and one of my first thoughts this morning, a week from Thursday I have to do it again.

Each man and woman who consciously makes the decision to sit down in that chair every two or three weeks and expose themselves to the hardships involved is a hero. Those who have gone before and those who come after, all heros.   The word survivor is aptly applied to those who have fought this battle successfully and hero should be used for all those who have fought.  Now I don’t feel like a hero, but I now look around that infusion room at the women in all those chairs who are on infusion 7 or 3 or 5, they are all my heros, if they can do it, so can I.

When we get a diagnosis of cancer we all become gamblers.  We all take a gamble, we play the odds when we get chemotherapy, some of us get better odds than others, certain cancers have better outcomes than others.   I am a gambler every three weeks when I sit down in that chair and allow a stranger to put things into my body that I know full well will hurt me as well as help me.  I am gambling that the help part outweighs the hurt.  I hope to win this bet and become a survivor and then become a hero to those who follow after me in that chair.  The hardest part of this bet…I have wagered  my life.

What is Fatigue? Apparently Making Homemade Sauerkraut!

Today is day four the day ” fatigue” is supposed to set in. I awoke to a bluebird sky with sun streaming in my window. As I lay in bed I thought I felt pretty good, the drugs are handling the nausea, no vomiting and the Zyrtec is handling the bone pain from he injection of Neulasta. That is the drug that makes your body kick in the production of white blood cells to stave off infections but causes bone pain. To combat that the Zyrtec. It really is amazing they have figured it all out.

I went down stairs and my sweetie Tom made me a smoothie to take some of my meds. I looked around the kitchen and lurking in the corner were three cabbages, fresh from the CSA begging to be made into homemade sauerkraut. This is easy peasy so I decided to go ahead and make it– fatigue , naw.

It’s simple:
Take a large pottery or glass vessel with a wide mouth about a gallon size. Clean with hot soapy water, rinse and dry.
Take 2-3 medium cabbage, peel outside damaged leaves and rinse.
Cut in quarters and remove core.
To cut/shred the cabbage use a knife or a mandolin. I use the mandolin because it goes so fast. Make the shred thin as you would for cole slaw or kraut.
Every half cabbage you shred, place in bowl and toss with a heaping tablespoon of kosher salt. Keep shredding and salting.

Once shredded toss well and let sit 15 minutes to draw liquid out of the cabbage.
With clean hands start packing cabbage into crock or glass. Pack it all in and pour any liquid in the bottom of the bowl in with the cabbage.

Weight done the top with a plate or a plastic bag filled with water. The objective is to make sure you form a seal to avoid anything growing on the top or it drying out and to keep weight on the cabbage as it ferments. Check after a day or two and make sure there is liquid up to the top of the cabbage. If dry, add a bit of water to cover.
Make sure your crock or glass is sitting in another bowl in case there is to much water and overflow.
I taste the kraut after a week to see if it’s to my liking. The more sour you want it –just leave it longer. Two weeks usually gets me the finished product I like.

The beauty of homemade sauerkraut is the crunch that is missing from canned or packaged kraut. My daughter who was never a fan of kraut, LOVES homemade.

The leftover leaves and pieces I chop up to make a chunky coleslaw with a creamy dressing. I will add in whatever fresh veggies i have around, today, red pepper, carrot and fresh snow peas from the garden. The dressing:
1 cup olive oil
1/2 cup apple cider vinegar
1/2 cup honey
Salt and fresh ground pepper
1 tsp caraway seeds
1 tsp cumin seed
1/2 cup white beans (more if you want it creamier)
Put all in blender and taste for seasonings.

Ordinarily this would be the beginning of a very productive day, but after finishing I am exhausted. I guess this is fatigue!

“I Am 98% Sure It Is Cancer”

I have always rooted for the underdog, books, movies, athletics, horse racing, spelling bees, whatever the venue, I want the underdog to win. It is satisfying, cathartic, renewing and reminds us we all can succeed. Life is full of great stories where people beat the odds– so when I sat in the dark cold room filled with video screens I too hoped to beat the odds. A radiologist, my husband and I, dressed only in one of the gross blue print hospital gowns that flap open, sat starring at the mammogram of my right breast. He pointed to a fuzzy round mass and said, “I am 98% sure it is cancer.” I was the underdog and oh how I wanted to be that 2% and beat the odds.

A lump on my breast brought me to my doctor on May 6, 2012. I’ve found many lumps in my breasts in my 59 years, been called back for extra views on mammograms for something suspicious, had ultrasounds, but they have all been negative. This time there was a sense of urgency I’d never heard or felt with all my previous exams. This time my doctor felt the lump and within 10 seconds told me to get dressed, the sense of urgency in her voice was unmistakable, I no longer beat the odds. When she returned to the room she picked up the phone and called the mammography lab to see if they could take me immediately. This sense of urgency scared me to death. Less than 24 hours later I sat in the dark cold room with my odds so bad no gambler in their right mind would bet on me.

This blog is my journey with breast cancer and my recipe for living with it forever. It is partially a self-indulgent endeavor to get things off my chest (a pun on bilateral mastectomy—I will find laughter wherever I can), a journal on to how to be brave, how to ask for help, how to laugh and how to eat. I am a chef my life is food and food will be a huge part of the posts. I have helped many family and friends over the years work through cancer with food, laughter, listening, love and tears.

We with breast cancer are the underdog and when we hear “I am 98% sure it is cancer”, we need to know the underdog wins this time.

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