Day 19 of Radiation

Sheesh!  Enough already.

I still have four more days of radiation to go... 

At this point my left breast is a sad puppy: bright pink and droopy and tender.  When I brush against or bump into something, it reminds me of being  a nursing mother and having to drive home from a days's work with tender cement blocks on my front, overfilled with milk.

I want to tell the radiation folks, "Thanks---this will be enough for me." 

Oh well, I guess dropping out is not allowed.

My energy level is low but I keep bumbling around trying to do things instead of just resting.  As a result, things take longer and the choices I make are not as good.  Short circuits in the frontal temporal lobe.

The good news: I hope to start the drive to Colorado on Aug. 1.

Also on that day I start taking Arimidex, one a day for the next five years.

Yippee, I'm on The Pill again.  Not.

At least I don't have to do chemo therapy. 

Radiation, Day 14

Today I completed my 14th radiation treatment.

I lay down on the narrow white table while the three-foot wide screen with its high-pitched hum added a zzzzzzzz in about middle E and aimed invisible rays at my left breast.

It moved across me from right to left and continued to buzz at me from the lower left, aimed at my armpit and the left side of my breast.

That's what the treatment is like every day; I will have a total of 23 of those expensive treatments (covered by Medicare).

Then three male technicians did some talking and measuring to prepare for the seven booster treatments that will begin next Wednesday.  Dr. McCloskey came in and checked on whether they had the right location.  

With her okay, they drew an large oval on my left breast and then took a photo of it.

I changed from hospital gown into my clothes and left.  

In a good mood, I decided to sit on the patio and check my cell phone while waiting to see if my car's oil change was completed.  

Because I was outside when I made that decision, I had to step over a couple of four-inch edgings to get to the patio.  (From inside, I could simply have opened a door to the area.)

Looking toward the patio, but not at my feet (one of which is wearing a huge black soft cast), I stumbled on one of the little edgings and nearly fell.

No big deal, right?  But it was the same kind of stumble that had put me in that cast for the past two months.  Realizing that I had done it again--I had not learned my lesson--caused me to burst into tears.  I sat on the patio and cried.

At home, I took off my shirt and stared at my left breast: pinker than the right, tender, slightly swollen.  Also the underarm area (near where two lymph nodes had been removed) showed a rectangular pink imprint.

For the first ten treatments, the zapped breast had not showed much difference from the other one.  Now the radiation is finally having a visible effect.

Of course, the scar from the lumpectomy is still red--a dramatic little unhappy smile.  At least it's no longer looking infected.  There's still a small red spot where the biopsy needle entered in April.  The incision in the underarm has faded to a pale thin line. 

I squeezed some Miaderm radiation relief cream out of the tube and gently soothed it onto the whole left breast.

14 down, 9 to go.

Dense tissue--dense issue

Have you ever been told you have dense breast tissue?

If so, an annual mammogram is not a very effective way of finding out whether you have a small tumor.  

Your report can come back stamped "Normal"--no signs of any cancer.

But that white stuff that fills part of your x-ray can be masking a tumor.

An ultrasound is a much better way of finding a small cancer, perhaps before you can feel a lump.

My mammogram last March was rated negative--no cancer.  

But some guardian angel in the medical world recommended a follow-up ultrasound, and in that image the tumor popped up on the screen dramatically.  

Both the technician and I could see it.  The only question was whether it was benign or malignant, and a biopsy answered that question.  Yep, cancer.

Half of all women have dense breast tissue, but the issue of whether we should get a follow-up ultrasound comes down to money.

There's been a lot of debate over whether insurance companies should cover ultrasound for us.  After all, many of those ultrasounds will not reveal a tumor.   Many of the follow-up biopsies will show the tumor to be either pre-cancerous or not cancer at all.

When one type of screening suggests further follow-up, and that follow-up shows that there is no problem, the first screening is considered to be a "false positive."  In other words, insurance companies wish they hadn't paid for the follow-up.  It wasn't needed, in their view.

In my view, a follow-up that says I do not have cancer is just as important as a follow-up that is positive for cancer.  The first one saves my peace of mind, the second one saves my life.  

Insurance companies, of course, want to do fewer mammograms and ultrasounds. 

Women don't need to start annual mammograms at age 40, some are saying.  Starting at age 50 is better.  Not many cancers are found between ages 40-50.  

Another suggestion is that women over 50 only get a mammogram every other year.

Insurance companies are interested in saving money, not saving lives.

Ten years ago I was told that I have dense breast tissue and that I needed a follow-up MRI after my mammogram.  

I did it.  The result was negative--no tumor.  My health insurance company didn't want to pay for that MRI, but they finally did.

When the doctor recommended a follow-up ultrasound this year, I was worried about the cost.

"Will insurance pay for it?" I asked.

"Yes," they said.  I made the appointment, the cancer was found, and treatment began.

In both cases the message was just "Dense breast tissue... follow-up recommended."

If not for that ultrasound, my cancer would be growing this summer from stage 1 to stage 2 or 3.  

I'd be going in for my mammogram in March, 2015, and getting bad news.  

Radiation and sadness

These days when you get radiation for breast cancer, you fill out a form weekly to monitor changes in your breast, your skin on the breast, your tiredness, and your moods.

I don't understand why I have to report any feelings of sadness, depression, lethargy.

Hey, I have cancer, right?  So of course it's going to get to me at times.

I also don't understand whether my feelings are caused by radiation and cancer or by a host of other things.  Filling out this form doesn't measure what's happening in your life and in the world besides radiation.

After all, three Israeli teenagers were kidnapped and had been missing since June 12.  They had been hitchhiking home from a religious school, Shavei Hevron yeshiva. 

Their bodies were found on June 30, and their funeral was on July 1.  Israel had already started bombing Gaza and Palestinian cities.  

http://www.nytimes.com/2014/07/01/world/middleeast/Israel-missing-teenagers.html

I had been crying about the sadness of the abduction, on the weekend before my first radiation treatment, June 30.  I filled out the form on July 1 saying that yes, I had been sad.  I had been crying.  I marked it "mild."

Then on July 2 a Palestinian teen was abducted from his home and murdered.

http://www.cnn.com/2014/07/17/world/meast/israel-palestinian-teen-death-indictment/

As the month continues, Israel has been bombing Gaza increasingly.  Hamas has been firing rockets into Israel.  On Wednesday July 16, Isareli rockets killed four little kids playing soccer on the beach in Gaza.  

http://www.boston.com/news/world/middle-east/2014/07/16/four-young-boys-killed-playing-gaza-beach/Lxrn3OaifRIw4RFfyj8KZP/story.html

And UCLA still wants to know if I have been sad in the past week, on a scale of 1 to 5.

While reeling from the deaths in Israeli and Palestine, we started some home construction on July 1.  Half of our living room furniture is now in our small kitchen; the other half is covered with plastic in a corner of the empty living room.  We can't enter our front door because a sheet of plastic hangs between the chimney area and the rest of the house.  

Instead we walk past the demolished chimney to the back door, past several ineffective levels of fencing to try to keep the dogs in the yard.  The bigger dog keeps getting out; one day I had to pick her up from the pound and pay $46.  

Along with the radiation and the grim international news and the home construction, I'm wearing a soft cast for a fracture of a bone spur on my left heel.  (On May 5 I stumbled over a cement block marking a parking space in a garage--while on my way to buy a book on breast cancer.)  That injury hasn't healed, may need surgery.

So on Tuesday I looked at the question about sadness during my radiation and marked it not "mild" but "occasional."

I guess radiation is going to get credit for my sadness because there was no space to note that most of it is based on discouraging events, both international and at home.  



 

Oncocyte Score...

The word oncocyte still feels very awkward on my tongue, but I have good news to report:

My oncocyte score is 17 (out of 50).  The lower the better on this evaluation of the exact type of cancer cell I have.

Under 20 is considered low risk.  That is, I have a risk of about 10% of recurrence of the cancer--after completing radiation and after taking an Aromatase inhibitor for five years.

One in ten--that seems pretty scary to me, but I am grateful that my particular type of cell is not the very aggressive type with a 1/3 or 1/4 risk factor.

What random factors go into having cancer--when you discover it, what type you have, whether it's caused by genetic predisposition, by environmental conditions, or by sheer chance.

l'm becoming more grateful by the day for each aspect of my health that goes well.

Good news on BRCA 1 & 2

I called my doctor today to find out whether the results of my blood test are available yet.

She said it was negative for the BRCA 1 and 2 genes.  

That means that I don't need to have a mastectomy or double mastectomy.  Hooray!

Instead I will be starting radiation on June 30, five days a week for 4-6 weeks.

On June 23 I will do the prep for radiation, including getting four dots tattooed on the precise area where the x-rays will be aimed.  That will enable the technicians to direct the radiation exactly to the right spot each day.

When she heard about the tattoo, Roz teased me: "Wow, Mom, you're finally getting one!"  (I was not too happy when she acquired a rose tattoo and then a butterfly as a teenager.)

I'm so grateful that she and her sisters now don't have to worry about having the breast cancer genes, at least not from me!

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).  

See https://www.myriad.com/products/bracanalysis/

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.