A recipe for living with 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!

 

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.”

 

 

What a Fabulous Day!

What a Fabulous Day Smoothie

1 cup unsweetened vanilla organic almond milk

1 cup organic frozen strawberries

2 T organic agave

1/2 banana

1 cup assorted leftover fruit in frig, berries, pineapple etc

1 cup fresh organic kale

Blend and enjoy.

The sun is shining and I am alive, what a fabulous day!  My kids and grandkids are healthy and my hubby loves his job, what a fabulous day!  My niece made it through 12 hours of surgery, is out of the ICU and doing well, what a fabulous day!  I have radiation and major surgery to finish this cancer therapy, but I don’t care, what a fabulous day!

I was brightened this morning with a phone call from Josh.  He calls almost everyday either on the way to work or on the way home from work.  Today was a “bluebird sky” day in Jackson, WY and while we chatted he saw two otters having a high old-time slipping and sliding and diving in the defrosted stream.  In my mind’s eye I could see them just having a blast and reveling in the spring thaw and cool or COLD water rushing over their dense fir.  Then he saw a swarm of snow buntings (birds) -20 or so -dashing and diving, swerving and banking back and forth in front of him on the road.  He mumbled about loving his job, loving it there, and loving his life, what a fabulous day.

He told me about a group he is helping lead this week, 30 ethnically diverse high school students from all over, many from inner cities, brought out to learn about jobs in the national park service.  The national park service is not diverse and they are trying to change that, kudos to them.  These kids flew in last night to cold temps in the single digits, huddled deep in their coats, hands shoved deep in their pockets and darkness so complete you could barely see your hand in front of your face.  They were probably freaking out thinking what have I gotten myself into… After Josh and I marveled at what he’d seen, the blue sky, the mountains starting to  explode against the crystal clear backdrop, he said; “these kids are waking up after being cloaked in darkness and trepidation last night and looking out the windows and seeing this, how amazing is that!”

I would love to have been there, a fly on the wall, as these young kids got their first view of the day, their surroundings, the excitement and the wonder, you can’t help it out there, its transformational.

I live vicariously through Josh on these phone calls when he sees something, hears something, or is stopped by a bison(s) crossing the road.  I feel as if I am there and can’t wait to get back to experience it myself.

Buoyed by my Jackson fix I did a bunch of stuff around the house and sat and had my organic, vegan fruit and veggie smoothie for breakfast.  I filled out a questionnaire from UPMC Cancer Center about the care I have received thus far from the cancer center.   I thought about the last 10 months and what I’ve gone through, what my niece is going through and like the view of the Tetons rising from the ground to meet the sky, suddenly realized, I feel great today, what a fabulous day.  I am done with chemo, that was awful, but I am done, I am done with three surgeries and have one more, almost done and I have radiation, but I feel great today, even with the discomfort of the surgery, the skin expander, I feel great.

I am so lucky, I am so lucky, and Reviva can now say Ghee…what a fabulous day!

When we went to the surgical center this morning it was a reunion of sorts. First up was check in where I filled out a form, spelled my entire name, recited my birthdate, allergies, why I was there, and no I was not staying overnight. Then Tom was handed a form and the same beeper/responder you receive at a restaurant to let you know your table is ready. In a surgical center it goes off when your loved one is out of surgery. She handed these items to Tom and instead of the usual instructions she merely said, “you know the drill!”

I then was called to registration where again spell your name, birthdate…all the same info…and are given a wristband with your name and birthdate -“please check the spelling etc.”- this individual looked at me and said, “you were just here, what are you doing back so soon? ”

Then into preop where nurse Doreen -who was my nurse the last time- saw me and immediately said, “hi, what are you doing here?” it is naturally wonderful to be recognized and welcomed back unless it’s in the surgical center when you are returning for an oops!

I am doing fine, discomfort, some pain and knowing the last piece of visible cancer is gone. I hope the next time I am recognized in the surgical center the discussion will be like the song from Cheers

Hi everybody.
Barrrrrrb!

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.

I am participating in a program which carefully monitors breast cancer patients for lymphedema. The idea is to identify any symptoms even the smallest early on and treat it before it becomes even obvious to the naked eye and prevent it from becoming uncontrollably awful. There is a numerical scale and if you move 10 points or more you need to address things immediately. What this means is going from not wearing a compression sleeve to wearing a compression sleeve.

In my continuous search for information on cancer, mastectomies, chemo therapy I have now added lymphedema to the list. The internet has been amazing with the quick availability of information but especially lectures from doctors, specilists in field like reconstructive surgery, cancer therapy, lymphedema research, are among the tens of thosands of lectures out there now avaialble to us. For those of us that can remember, think about the hours researching in a library through the Dewey decimal system, books, papers and microfish, remember those crazy machines…I digress.

I found a lecture from Stanford Universitthaty which was tremendously helpful in my understanding and decision making for surgery. And found an equally good series on lymphedema also from Stanford which was helpful in understanding it and towards the end disturbing for the changes lymphedema can cause. I don’t have lymphedema, but want to be prepared just in case.

I had a baseline test done in November and today I had my second test, I went up six points. In discussion with the nurse there are so many variables; was the first value correct and is todays number correct? You cannot have any metal on or in your body as this will change the value and the skin expanders have a bit of metal. I will have another test before radiation therapy starts and will have regular measurements thereafter. Only 20% of breast cancer patients get lymphedema, so once again I am faced with chance and percentages.

When my lumps were first seen, the radiologist was a 98% sure it was cancer. When my chemo therapy was over, the tumors had shrunk 50% and 33%. The oncologist said I have a 90% chance of being cured. Since my tumors didn’t disappear with chemo I need radiation, the radiologist said women in my category who don’t get radiation have a 20% chance of recurrence, with radiation, it goes to down under 5%. Lymphedema, there is a 20% chance I will have it and 80% chance I will not. And the thing about lymphedema as of the 2010 lecture, they don’t know what the risk factors are in getting it.

I am 100% sure of one thing a percentage here a percentage there…this is nuts!

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