Thursday, May 29, 2014

Travels with Cancer

My post-op doctor visit after my lumpectomy was May 21, and at 7 pm (after LA's rush hour), I started the drive to Colorado, planning to stay for a month and return for radiation in late June.

However, my radiation oncologist, Dr. Susan McCloskey, wants me to get the breast cancer genetic testing done before the radiation.  There's a small chance I could have the BRCA 1 or 2 gene, in which case I would have a mastectomy instead of radiation.

They couldn't do the blood test on May 21 at the UCLA Breast Cancer Center in Santa Monica for several reasons:
Medicare has to approve it before the blood is drawn.

  • Medicare has to approve it before the blood is drawn.
  • You need an appointment for a full genetic counseling session along with the blood test.
  • It has to be done with the proper kit (from Myriad Genetic Testing, the only place in the US that does BRCA genetic analysis).
  • UCLA only does these tests for Medicare/Medicaid/Covered California patients on Fridays.  (Persons with private insurance can get the test on Monday through Thursday).  

I already had a scheduled appointment for the genetic counseling and blood test on Friday, August 1, but my doctor said we need to get the results sooner.  She asked her staff to try to get the Medicare approving done quickly and get my blood test date moved closer. 

I asked her if I could just get this blood test done in Colorado.  "They do have hospitals and clinics there," I said.

"Oh," she said.  "It's not the third world!  But I don't know if it could be arranged...." 

I didn't like the idea of sitting around in Santa Monica waiting for all these things to happen, so I just hit the road with my two dogs.

On Friday afteroon, however, May 23, someone from UCLA called my home to report that they had had a cancellation and could give me an appointment for sometime in the next week.  (Was Medicare approval already granted? I don't know.)

My husband picked up the phone and said, "No, she can't take an appointment for next week.  She's in Colorado and won't be back until June 20."  He emailed me to let me know about this.

I was driving across the Navajo Nation near Medicine Water when the email showed up on my cell phone.  I didn't notice it, of course.  I was trying to listen for phone calls and check text messages in between stopping to walk the dogs, but I sure wasn't checking email.

That night when I reached our second home near Telluride, I called John to tell him the dogs and I had arrived safely.  He mentioned the phone call and the offer of an appointment next week for blood testing.

My heart sank.  Just after doing the arduous drive with two dogs, was I going to have to turn around and drive back?

I knew the health center offices would be closed until after Memorial Day weekend.  On Tuesday morning, I began phone calls trying to figure out whether the testing could be done in Colorado and whether I needed to drive back to California.

The answer was: drive back.  

So the dogs and I are on the road again.  We spent the night at Motel 6 in Flagstaff, and one of them peed on the motel room's floor.  

Off I went to buy dog urine odor remover.  I used my elect-Obama sweatshirt from 2008 as a cleaning rag.

And now we're about to hit the road again for my appointment Friday at 9 am.  

After that, I will turn the car around and start back to Colorado.  Maybe John will come with me and drive part of the way.

Tuesday, May 27, 2014

The WSJ -- Dr. Daniel B. Kopans

I'm going to choose civil disobedience and copy below the text of the opinion piece by Dr. Daniel B. Kopans in The Wall Street Journal, Friday, May 23, 2014.

I appreciate the Dow Jones Company's need to use a pay wall to support the work of the reporters and editors of the Journal... but most people will have a hard time getting this important information without subscribing to the WSJ in its print or online editions.  

For those who already subscribe online or who would like to subscribe, here is the link to Dr. Kopans' article with another link to subscribe and read the article:,7,121,122,201,401,641,1009

The text for those who can't subscribe:

Mammograms Save Lives

Kopans, Daniel BView ProfileWall Street Journal, Eastern edition [New York, N.Y] 23 May 2014: A.15.

Abstract (summary)

A paper in the Nov. 22, 2012, New England Journal of Medicine by Drs. Archie Bleyer and Gilbert Welch concluded that mammography screening was leading to substantial "overdiagnosis" "and that screening is having "at best, only a small effect on the rate of death from breast cancer."

Full Text

Saving Money, Not Lives

Insurance companies don't want to pay for mammograms for women ages 40-49.

Neither does the federal government--we have to reduce the national debt, right?

Never mind that 100,000 women who could get regular mammograms during that decade of their lives "would eventually die from breast cancer as a result of waiting until 50," according to computer models of the US Preventive Services Task Force, as reported by Dr. Daniel B. Kopans in last Friday's Wall Street Journal.

In spite of these statistics, the Task Force in 2009 changed its recommendation to screening only at age 50 and older.

Fortunately, the Obama administration did not support the Task Force's recommendation, and when the Affordable Care Act was signed into law in 2010, insurance coverage for mammograms for women in their 40s was mandated.

You can find more details in Dr. Kopans' article.  Here's a link that leads to the WSJ but there's a pay wall between you and "Mammograms Save Lives."  If you have access to a school or college, you can get the article through ProQuest Newsstand.

Both the American Cancer Society and the US Preventive Services Task Force are currently reviewing their guidelines on this issue, according to Dr. Kopans.  Insurance companies base their coverage decisions on these guidelines.

It behooves all of us who care about this issue to call, write, email and otherwise lobby to make sure the screening guidelines return to coverage for women ages 40-49.

Thank you to my husband, John Arthur, for telling me about the article by Dr. Kopans.

Below is the letter to the editor I sent today to the Wall Street Journal:

To the editors:

As a woman whose breast cancer was detected by ultrasound screening recommended after a mammogram, I want to thank Dr. Daniel Kopans and the WSJ for his opinion piece "Mammograms Save Lives" (May 23, 2014).

Actually, the article has more facts than opinion but its message is loud and clear: "Criticism of breast-cancer screenings is more about rationing than rationality."

My mammogram in March was "normal" but because of dense breast tissue, a follow-up ultrasound was recommended.  It clearly showed the mass, which after biopsy was confirmed as stage 1 cancer.  If an ultrasound had not been recommended, my cancer would not have been detected until a year later.

I have learned that 40% of women have dense breast tissue, which makes not only a mammogram but follow-up screening critical.  Many times I've been informed about the density of my tissue, but only once in the past has follow-up screening been suggested (in that case, an MRI which my health insurance did not want to pay for).  

I am so grateful that mammograms for women 40-and-older and follow-up screening in about 10% of mammograms are paid for by health insurance.

I will begin working to make sure the US Preventive Services Task Force restores its screening guidelines to cover women ages 40-49.  I have a blog on breast cancer ( can use media such as Twitter and YouTube.

I am currently 65 years old but care deeply about the 100,000 women whose lives could be saved by screening at 40 but "would eventually die from breast cancer as a result of waiting until 50" (according to the Task Force's own computer models.

My daughters could be among those whose lives would be lost by a lack of insurance-covered screening.

Anne Eggebroten
Santa Monica CA 
"The important thing is that when you come to understand something you act on it, no matter how small that act is." --Sr. Helen Prejean

Wednesday, May 21, 2014

Hitting the Road

After rush hour and I'm about to drive to Needles, California, with Na'ilah and Stormy.

The next day-- Cortez, Colorado?  Farmington, NM?

The next day--Telluride.

I had a good post-op check-up with Dr. Kusske and Dr. McCloskey.

Radiation will start June 30--and until then, I'm a free bird!

Tuesday, May 20, 2014

Feeling Good on Day 4

I woke up today feeling rested and normal.  Wow!

Had to laugh when I read Mary Jo Cartledge-Hayes' Facebook comment on lumpectomy: "like having a splinter removed"!

Well, not quite, but not too big a deal either.  

It's great to look down and realize that the cancer is not there any more.

I'm wondering why they don't give women antibiotics after a Wide Local Excision (lumpectomy).

I know we are not supposed to overdo antibiotics and make bacteria more resistant to them, but after being cutting open, I would have appreciated some help for a few days.

Maybe that's why I wasn't tired on Day 1 post-op but was very tired on Days 2 and 3.  Maybe those were the days when my body was fighting off a lot of germs.  

Now I'm feeling confident about getting on the road to Colorado tomorrow after my post-op appointment with my doctors.

Monday, May 19, 2014

Day 3 Post-Op

After 8 hours of deep sleep, I woke to a phone call from the nurse at 8:15 am. 

That gave me a chance to ask my questions about the surgical vest.  The answers were:

  • Continue to wear it 24/7 until your post-op check-up.
  • No reason for it to have been put on inside out (must have been a mistake).

I stayed in bed another hour, just wanting to sleep more, but finally got up and had an active morning walking around the block with the dogs and watering all my flowers and newly transplanted vegetables.

The underarm incision still hurts, but ice packs help.  

I drove Roz to Starbucks at 1 pm and then went back to bed, exhausted.

At 4 pm I visited my neighbor Lani, who is a veteran of stage 1 breast cancer that occupied most of 2008 for her.  What a pleasure to compare notes with her and vent on all the little irritations of what was actually a very successful surgery!

She told me about the next step: radiation.  You're really tired and you need to start putting Aveeno cream on the area two weeks ahead so your skin won't dry out too much.  

Back to bed 7-8:30 pm... at this rate, I won't be driving to Colorado on Thursday.

My big question: am I a survivor yet?  When do I get the official designation: Breast Cancer Survivor?

Is it after surgery?  After radiation?  

I want a badge to wear, but maybe I haven't earned it yet.

Sunday, May 18, 2014

Sleepy Day

I never got out of the house today, not even to check on my new vegetable garden.

I slept until nearly noon because I napped yesterday evening from 7 to 9 pm and then stayed up until the wee hours.  

At about 2 am I wondered why my right underarm hurt as much as the left one, where the lymph node had been removed.  Upon investigation I realized that the surgical vest has straps that can be lengthened.  They were still at the shortest position though I have a long torso.  I loosened them and felt a lot better on the right side.  

Yesterday was pain-free, but today my left underarm did ache as if it had been cut open, which it had.  Cold packs helped; pain pills did not seem warranted.  The small breast incision did not hurt.

I just wished the surgical vest had come with instructions: 

  • Wear for the first 24 hours?  
  • Wear 24/7 until my post-op appointment?  
  • Wash, dry, and wear again if desired?

With the still-tight underarms it was a strait jacket, the most uncomfortable part of the WLE experience.   

Breakfast in bed at 1 pm was a treat--grits with cheese and bacon chunks from Ellen.  What a comfort food!

Reading every inch in the LAT and NYT about California Chrome at the Preakness was the best part of the day.

I spent a few hours at the computer, making a first post-op appearance on Facebook and in the EEWC-CFT community group as well as checking my email, that first duty of every 21st-century citizen.

Then I talked to my cousin Becky on the phone, slept a a few more hours, and took my first bath since Friday.

Becky was a bridesmaid at my wedding in 1972 and is also the survivor of thyroid cancer in her late 20s.  She's inspiring!

Saturday, May 17, 2014

Day After

I didn't sleep much last night.  

Foot cramps--using the toilet after drinking so much cranberry juice--not being sleepy.

About 8:30 am I finally got up, feeling woozy, and ate a bowl of oatmeal.  I checked on my vegetable garden and watered it.

No pain at all--just a slight ache.  No excuse to use the hydrocodone pills.

At 9:15 I walked the dogs, just around the block.  Made it.

At 9:45 I woke John up and told him that Pet Affaire won't groom Na'ilah if he doesn't get her there by 10 am.

He did it.  

I rested, puttered around the kitchen.

John drove Roz to work at 1 pm.  He brought me a skinny peppermint mocha venti from Starbucks--but he forgot to ask for it to be decaf.  I stayed up all day, wired.

On television we watched California Chrome win the Preakness in Baltimore--yay!

Ellen came by at 3 pm, and I proudly showed her how clean the garage is.  She brought grits made with cheese and chunks of bacon--delicious!

I showed her my surgical vest, and she pointed out that it was inside out--so that's why the zipper had been stabbing my collar bone all night.  We changed it, and I was surprised to see the big blue splotch on my breast and the two separate patches over incisions, one on my breast and another under my arm.

After I got the vest back on, I asked her to take a couple of photos to document my garb.

I slept from 7 pm to 9 pm, then got up and talked and wrote in this blog.

Marie called and I had a great talk with her.



WLE aka Lumpectomy

A successful day--all went as planned, more or less.

I spent 8 - 10:30 am digging up the last section of my kitchen garden and setting in five tomato plants, some herbs, 6 seedlings of corn, and three cucumber plants.  On the other side of the yard I replaced a dead pink bougainvillea with a new one.

I showered and reported to the Barbara Kort Women's Imaging Center at 11 am--but was told I was late for my 10:30 appointment.  What???  Oh well... I was there to have a wire implanted before the surgery in order to guide the doctor to the exact spot for the lumpectomy, also called a wide local excision (WLE).

The young doctor and radiation technician couldn't find the lump on the ultrasound screen, so they called in a senior doctor (my age).  I glanced to my right at the screen and couldn't blame them: it looked like a black and white photo of an ocean with a lot of dark waves and some streaks of white.

They decided to do a mammogram to find it and the clip that had been placed three weeks earlier to mark the spot.  That worked well and they felt confident they had found the right spot.  

There was a lot of whispering at the back of the room at intervals.  I wasn't as confident that they had found it, but I wasn't in any position to question things.

All were women--which was great.

After a local anesthetic they stuck a needle in the breast and injected it with blue dye that would identify the lymph node to which this part of the breast drained.  Then they inserted the wire. 

"Squeeze my hand," said Trang Le, the mammogram technician, and I did when they inserted the needle, but she was such a small person I didn't want to hurt her hand by squeezing too hard.

Soon I was swaddled like a baby and wheeled outside to a van waiting on the street where I had often pushed my mother in her wheel chair six years ago.  Ah, the changes that time brings!

I was driven around the corner and the next corner, half-circling the block, and deposited at 1223 16th Street, where I was grandly wheeled in now feeling like a queen on the red carpet.

Soon I was in the Surgical Center on the second floor.  It was about five minutes before 1 pm.  Neither John nor my friend Lee Jones, who were planning to be in the waiting room throughout the surgery, saw me enter.  Just as well. 

I changed to a new surgical gown, met the anesthesiologist--another wonderfully warm woman--who decided to do an EKG before the surgery just in case.

She said she would be giving me propyfol and a gas, as well as something to calm me before surgery.  A nurse put an IV on the back of my right hand.  

Ivar Guttierrez, who had been my wheel chair escort, was now sticking the round disks on my chest and abdomen.  We chatted and as he removed them and left, he said, "Good luck, young lady!"

I never leave that stone unturned.

"I am 66 years old," I said politely.  "I could be your grandmother."

"No, not my grandmother," he reflected.  "My mother is 66 too.  I'm 38."

I sure wasn't going into surgery being addressed like a ten-year-old. 

(Note that today Bobby Shriver, candidate for LA City Council, addressed his rival candidate Sheila Kuhn, as "young lady."  She's about 74 years old.  She let him have it.  Good for her.)

The next thing I knew I was in the same place waking up.  John was sitting there.  

A nurse was telling me that I could drink some cranberry juice and soon get dressed and go home.

I wanted to tell her, "I don't want to go anywhere.  I just want to stay in this bed."

But that was not the plan.  This was an outpatient procedure.  I found that I was wearing a surgical vest (actually a short strait jacket) to keep my sutures and all in place.  Once changed, I was wheeled out and got in John's car, waiting at the curb.

By 5 pm I was home and in bed.  

Allowed to eat for the first time since Thursday evening, I asked for French toast.  

John had to walk the dogs, go to the store for cranberry juice, watch a hockey game, and who knows that else.  The French toast appeared closed to 11 pm.  

Meanwhile I lay in bed answering the phone and calling my brother Bill.  When I told him about the problems locating the tumor to insert the wire, he said that in 5% of lumpectomies, the surgeon can't find the correct spot, and the surgery has to be redone.

He also delivered a complicated lecture on how older people often don't need to do anything about small cancers because the treatments are more dangerous than the slow-growing cancer itself.  Some people die of treatments that would have lived much longer with slow-growing cancer.

I appreciated the prayers of so many friends, and the prayers and vigil of Lee Jones.

Wednesday, May 7, 2014

The Big Consultation

I met at 9 am with four doctors, a coordinator, and a nurse today at the UCLA Breast Center, 1223 16th St., Suite 1000, in Santa Monica :

1)  Amy Jacobson, RN and Nurse Practictioner, who is doing a study of breast cancer patients pre-and post-surgery

2)  Parvin Peddi, Medical Oncology -- head of the team;

3)  Amy Kusske, Breast Surgeon;

4)  Charles Tseng, Plastic and Reconstructive Surgery;

5)  Susan McCloskey, Radiation Oncology;

6)  Robyn Dvorak, Breast Center Coordinator, and

John Arthur (my spouse) accompanied me.  The room was about 8' x 10'.

I sat in a white-covered examination chair as each doctor came in one by one, introduced herself, explained the procedure, and explained her role.  John sat slightly away from us, forming a triangle with us, and remained quiet during most of the hour and a half.

The doctors were each different but all very warm, engaging persons sitting face to face with me, almost nose to nose.  There was no big desk between us, no big impressive office.  The intimacy of each woman-to-woman encounter was delightful and made me feel confident in their decisions and their abilities.  I was so happy to have an all-female team (almost).

1)  Amy Jacobson, a nurse practitioner and researcher at UCLA, came in and asked if I would be willing to participate in a study of the physical and emotional health of women with first-time breast cancer shortly before and shortly after their surgery.  I said I'd be happy to participate.  

2)  Dr. Peddi was ethnically from India or Pakistan or an area near there and outlined the general plan.  She did an intake interview, which included me reporting three childbirths, 9 lb. 15 oz, followed by 9 lb. 3 oz. and 9 lb. 10 oz.  She said she had recently had her first child and compared her baby's weight.  It was a pleasure to talk woman-to-woman like this.

She reported that my cancer is invasive ductile carcinoma, the most common type of breast cancer (80% of breast cancer cases).  It's "been around for a while," is slow-growing and considered low-grade, and is estrogen-positive.   

Furthermore, breast cells depend on estrogen, and "estrogen-positive" means that the type of cancer cell I have still has its estrogen receptors, so cutting off its supply of estrogen is a way to kill off any cells that remain in the body after steps 1 and 2.

Step 1:  The tumor itself - "It's easily taken out."

Step 2:  The area around it - Radiation of the entire left breast in case any cancer cells have moved away from the main mass.  This will be done 5 days per week for about 5 minutes for 4-6 weeks.

 Step 3:  The rest of the body - Killing off any cancer cells that might have moved through the bloodstream or lymph system to the right breast or anywhere else in the body by taking one tablet per day of an aromatose inhibitor (Arimidex) for five years.  The aromatose inhibitors block formation of estrogen from hormones produced in the adrenal glands.  In post-menopausal women, these drugs cause a 99% reduction in estrogen.  They are more effective than Tamoxifen (a selective estrogen reception modulator) with fewer side effects.

3) Dr. Kusske was Caucasian with chin-length brown hair, maybe 50 years old.  I liked her as much as Dr. Peddi--nice to be looking into her light brown eyes.    

She explained that I would have a wire inserted before the surgery to specify the location of the tumor.  In addition to removing the tumor (7 mm x 4 mm x 5 mm), she would be sampling 1-3 lymph nodes.  If there is no invasion into the sentinel lymph node, that would mean that probably there are "no little tumor cells floating in the lymphatics in the breast tissue."  

She seemed very experienced and competent; I felt I was in good hands.

4)  Dr. Tseng, the plastic surgeon, was next.  He talked about "breast conservation therapy," "restoring shape after lumpectomy," "deformity," "improving the symmetry and shape of the breasts," and "rearranging tissue," which would only leave a "scar around the nipple and bottom of the breast."

I listened to him politely, but no way am I going to have any of this done.  John watched me as I listened to Dr. Tseng and knew exactly what I was thinking.   

5)  Dr. McCloskey will be in charge of my radiation.  She was much younger with blonde straight hair elegantly coiffed and with a Southern accent.  She said that during their preliminary conference before talking with me, the doctors had noted how I had "interestingly" and "fortuitously" chosen to have the ultrasound screening when receiving the letter with that option after my mammogram report was "normal" but with dense breast tissue.

Radiation is needed because there could be "small sub-centimeter tumors" remaining in the left breast after the lumpectomy.  "The lumpectomy with radiation has been shown to have absolute equivalence with mastectomy in six randomized trials with thirty years of follow-up," she said.

The full mastectomy is a risk-reducing decision, but she compared other risk factors:

  • 10% of the general population of women will develop breast cancer over their lifetime.
  • 10-15% of women treated for breast cancer will have a recurrence.
  • 25-30% of women with breast cancer will have a recurrence if they don't have radiation.
  • Under 10%--even as low as 2%--will have a recurrence if they have radiation.

She earnestly explained the radiation and its side effects.  The breast may have redness, like with a sunburn, and some change in texture.  There will be some tiredness and some weakening of the immune system.  They try to avoid exposing the left lung and heart to radiation, but they will receive some.  

All this begins in the fourth week after the surgery.  I asked her if I could have some of it done in Colorado, where I like to spend my summers, but she explained that you get measured and tattooed to hit the right spot using a particular radiation machine, and changing to another machine could affect the accuracy of the treatments.

Oh well-- half of June and all of July in busy Los Angeles instead of the mountains.  I should be able to live with that for one summer of my life.

6) Robyn Dvorak then worked with the doctors to determine the date of my surgery.  They had told me that it could be scheduled for Tuesday, May 20, at the earliest, but I explained that I would like to be in Colorado over Memorial Day weekend.  

"Can I leave by Thursday?" I asked.  "If my husband does the driving?"  Dr. Kusske said okay, but I needed to have my post-operative exam about a week after the surgery.  

I said that I had hoped to stay in Colorado for a week or two and just return for the radiation.

After some consultation with Robyn, suddenly I was offered Friday, May 16, instead.

Hooray!  My post-op will be Wednesday, May 21, and I will be alllowed to drive to Colorado after the appointment.  Without John... (with two dogs--well, I didn't mention the dogs).

I will get there in time for Telluride's Mountainfilm Fest, and a couple of friends are planning to stay at my house there.  Also I will visit my brother Bill, who will be in town that weekend.  I will stay another two weeks and report back for radiation at 4-5 weeks after surgery.

I am so grateful to be given this earlier date.  All the rest of what I heard doesn't bother me--well, the information about recurrence was big news.  

I'd been thinking that doing surgery, radiation, and either chemo or Tamoxifen/Arimidex would pretty well wipe out stage 1 cancer.  The statistics about recurrence mean my chances of recurrence will be somewhere under 10%. 

Hmmm.  Good, but still 1 in ten.