13 Facts About Metastatic Breast Cancer

(Note: published originally by the Metastatic Breast Cancer Network)

1. No one dies from breast cancer that remains in the breast. Metastasis occurs when cancerous cells travel to a vital organ and that is what threatens life. (luckily, I haven't had spread to a "vital" organ, just bones and lymph nodes)

2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain. (but it can be other tissues, also)

3. An estimated 155,000 Americans are currently living with metastatic breast cancer.(also called Stage IV breast cancer) Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S. (so far --more than 8 years now--I've avoided the group of 40,000)

4. Treatment for metastatic breast cancer is lifelong and focuses on control of the disease and quality of life. (Boy, howdy. It's tough to keep quality of life (QOL) and at the same time control the progression of the cancer.  Just ask me.)

5. About 6% of people are Stage IV from their initial diagnosis. (That would be me, lucky me.)
 
6. Early detection does not guarantee a cure. Metastatic breast cancer can occur 5, 10 or 15 years after a person's original diagnosis and successful treatment checkups and annual mammograms. (This is what's so scary for all my friends who've already "had" cancer and are no longer being treated.)

7. 20% to 30% of people initially diagnosed with early stage disease will develop metastatic breast cancer. (Oh, yuck.)
 
8. Young people, as well as men, can be diagnosed with metastatic breast cancer. (Yes, I know some.)
 
9. Like early stage breast cancer, there are different types of metastatic breast cancer. (For example, I have Her2+ breast cancer, like about 20% of breast cancer patients have.)

10. Treatment choices are guided by breast cancer type, location and extent of metastasis in the body, previous treatments and other factors. (Those "other factors" include the desires of the patients and what they will and will not suffer in order to try to subdue the disease.)

11. Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live for many years. (Eight years is considered "many" for this condition.)
 
12. There are no definitive prognostic statistics for metastatic breast cancer. Every patient and their disease is unique. (So the data that show that only about 20% of these patients live for 5 years may or may not apply to me.  But wait, it DID apply to me.  Yea, I'm an outlier again.)

13. To learn more about National Metastatic Breast Cancer Awareness Day on October 13 and to access resources specifically for people living with metastatic breast cancer and their caregivers, visit www.mbcn.org. (I'm sorry, but I do not "celebrate" on October 13th. I celebrate every day.)

The Mourners

She stood in the corner, holding the photo in her hands. The chapel in the funeral home was slowing filling up with his friends and relatives, or that was who she guessed they were.  Luckily, no one paid any attention to her.  They were paying their respects to the older couple who stood by the door, a tall silver-haired thin man grasping a cane, and a tallish woman who appeared somewhat younger than the man.  Her hair was mostly covered by a flamboyant scarf of many bright colors, dressing up the plain “little black dress” she was wearing.   

They must be his parents, she thought.  I wonder who they’ll think I am, if they ever notice me.  They may wonder why I didn’t come in through the front door and greet them like all the other mourners.

That’s who we all are, she thought.  Mourners.  The word even sounds sad.  Moourn.  Mooourning.  Mooournful.  Moooourners.  She felt moisture seeping into her lower lids and willed herself to hold back tears.  If I openly cry, she thought, they’ll suspect that I knew him well enough to cry about him.  If I don’t, they might think I was one of his colleagues who is representing the firm where he worked.

Most of the other people who had come into the room were finding seats in the chapel.  Marsha waited until the seats were mostly taken before she took a seat in the next to the back row.  She didn’t want it to be obvious that she didn’t want to be  closer to the front. And she didn’t want to be on the aisle, either, in case they wheeled the casket down the aisle to the front door at the conclusion of the service.

It was only Christmas before last when that photo album showed up at her door that she then started her search for what must be her biological parents.  She had finally told her adoptive parents (how strange that sounds; until recently they had just been her parents, her plain parents) about the photo album and they had admitted for the first time that she was adopted by them when she was almost three years old. 

 Marsha had become consumed with the need to find out as much as she could about her biological parents.  Once the album appeared, left by who? Her mother? Marsha had begun her search during which it turned out to be surprisingly easy to follow the tracks of her biological mother, who had never left the City. What little she had been able to locate thus far told her that her parents had stayed together for a few years, and then separated.  She couldn’t find out whether they had ever been officially married.  Not that that mattered much, these days, but then it would have mattered more, unless they kept their unmarried state, if that was what it was, to themselves.

But the biggest news she managed to find was there was a baby brother—her baby brother—who had also been adopted, but at a much earlier age than when Marsha had been adopted.  It turned out to have been just a few months apart that the adoptions took place.  He was in one or two of the photographs in the album that someone (was it Marsha’s real mother?) had placed outside Marsha’s door. Marsha would give anything to know what prompted her parents to give up one, and then the other of their small children.  Whose idea was it? Her father’s?  That seemed more likely.  But her mother would have had to agree.  Was there no other choice?   

Marsha had tried to keep an even keel about all this new news.  After all, her adoptive parents (there was that strange term again—she didn’t like it).  After all, her PARENTS had given her a wonderful childhood.  They couldn’t have loved her more unconditionally, more openly, more generously.  No, she didn’t want to devalue them in any way with her driving need to know more about those previously unknown “real” parents.  She hated that term, too.  Her Real parents were the ones who had raised her, not the ones who gave her away, even if they thought they had no choice but to do so.   

Who were they looking out for, Marsha wondered, my welfare or theirs? She couldn’t help but have resentment against both of them.  No one she knew would voluntarily give up one child , much less two, when there was both a mother and the father in the house.  Someday, she decided, she might continue looking for her mother, and maybe, later, for her father.  But the one she felt the most compelled to find was her brother. Her brother who might also be totally ignorant that he was adopted.  He most certainly was innocent—he didn’t give himself up for adoption. Marsha felt a strong sense of kinship with this unknown brother. 

So, once again Marsha set out searching, this time for her sibling. Her brother.  A brother who would be in his early 20’s, perhaps even married.  He could have a child, or children. It was just coincidence that so soon after learning her real mother and father’s names and her brother’s name and by whom he’d been adopted that she browsed the obit section of the NY Times.  She sometimes did that looking for off-beat or unusual obituaries.  And there, as if in 4 foot high letters, was the heading under the photo that Marsha now held in her hands. 

 JAMES WINDERMERE,  26 years of age, died Saturday in an automobile crash while on vacation in Florida.  He was the only son of Gladys and Thompson Windermere, founders and owners of the Windermere Technical Group, and well-known benefactors of many cultural institutions in the City.   

Marsha skipped over all the rest of the accolades and achievements and went right to the end, where the announcement of funeral arrangements was listed.  Today, at 2:00pm in the Chapel of St. Mary, on 95^th Ave. 

Which is how Marsha came to be standing in a corner, holding a photo in her hands. And in another corner, an older woman, holding the same photo in her hands.

The First Piece of Luggage

     The first piece of luggage pulled out of the cab’s trunk was picked up by one of the porters at the O. B. Tambo  airport in Johannesburg before I even knew what he was doing.  The cabbie was still reaching into the trunk for my carry-on bag and I was fumbling through my purse for the unfamiliar South African rands for a tip, when I felt a tap on my sleeve.  I looked up to see the young porter pointing at my big suitcase and saying something with an accent I didn’t yet recognize. 

I had come to South Africa on the run-up (as they put it) to the 1994 historic elections that made Nelson Mandela the President of the “new South Africa.” The timing was just coincidence, really, not directly related to the immense shifts about to come to this apartheid government.  I was invited by the Chairman of the Surgery Department, and Head of the Curriculum Committee, at the University of Transkei Faculty of Medicine and Health Sciences (or so the school was named at the time) to review and consult with them on their setting up of a problem-based, community-oriented medical curriculum and their multi-faceted student evaluation system that included standardized (or simulated) patients.  

The Transkei itself was a black “homeland”, and its medical school, not yet five years old was the only black medical school in all of South Africa.

The country of South Africa was headed into heady and sometimes violent change. The “homelands”, similar to our Native American reservations, were established in 1948 when apartheid became the official law of the land, and were about to be dissolved and reincorporated into the larger South Africa, where they had de facto existed all along.  

 But the official lowering of one flag and raising of the other was to take place in just a few days, during my visit. Various factions were struggling, sometimes with violence, to gain a grip on power.  In particular, the party of Nelson Mandela, the ANC—African National Congress—was very strong where I was headed, among the Xhosas in the Transkei homeland.  But the Zulus in the adjacent KwaZulu/Natal territory were bitterly opposed to the ANC and championed their own leader, Mangosuthu Buthelezi, and they were disposed to expressing their feelings with guns and even with “necklacing”—placing a rubber automobile tire around a victim and setting it afire. 

Because of the violence, real and perceived, the police and security people were on high alert and on the lookout for smuggled guns and other weapons.  This is what had occasioned the tap on my sleeve.  The porter had placed my suitcase in the metal detector newly placed at the entrance to the airport, and it had “flagged” my suitcase.  

“Madam,” he said as I finally understood the words through his accent, “what do you have in your bag?” 

I was so distracted it didn’t occur to me that there was a real problem here—it hadn’t occurred to me in advance of the trip that the surplus arm and wrist and leg braces that I had been asked to bring to the orthopedic surgeon who would provide housing for me during my visit could set off a metal detector.  It never occurred to me that there would BE a metal detector.  But detect it did. Those out-of-date braces had metal “stays”, whereas newer ones had plastic ones.  

“I have braces”, I stammered.  

 “Oh, fine”, he said.  “Personal medical equipment.” And he waved to the security person manning the machine to push the bag through.  They didn’t ask to open the bag and check, probably because I was Doctor Camp on my ticket, and I was a white woman, not a young black male with an African accent.  

 Still, it was a mistake on their part, and I was glad of it.

The Page Was Blank

Three days before Christmas, Marian was dead tired as she climbed the steps to her small efficiency apartment.  Life in the bowels of the big library downtown, returning great tomes of wisdom, and occasionally something interesting to their proper resting places on the long shelves was boring, boring, boring, and tiring, tiring, tiring.  Her spirits perked up a bit when she saw the package tipped up against her door.  She looked around at other doors.  Nope, no one else had a package outside, not unless they had already been taken inside.  Curious, she opened the card that was attached to the top of the package. The page was blank.  What the heck?   What? Who?

She unlocked her door, opened it far enough to drop her coat and purse on the chair just inside, and reached back for the package.  It had fallen over when she opened the door, and now she hoped there wasn’t anything breakable inside.  She lifted it gingerly—not too heavy—smaller than a breadbox, as they used to say on that old radio show they listened to when she lived at home—and not rattling around inside.

She carried it to the small hallway table she used as a dining table on the few occasions when she had guest for dinner, and set it down carefully.  Now she took a more careful look at the package.  Plain brown wrapping paper.  Heavy mailing tape sealing the edges.  The small envelope that held the blank card taped to the paper.  No obvious clues.  It didn’t come through the mail or by FedEx or UPS.  A private delivery company?  One of those bicycle delivery guys?  Maybe it wasn’t even for her.  Maybe someone left it at her door by mistake.  Probably a corporate Christmas present—one of those ubiquitous fruit cakes—for one of the other tenants.  But it would have to be a very large cake to fill up that box, or else it was packed in tons of Styrofoam peanuts.  

Well, this is silly, Marian thought.  Just open the thing and see what’s inside.  So, carefully, in case she had to re-wrap it when it became obvious that the package was intended for someone else, she used the kitchen scissors to cut through the tape at one end of the package and gingerly unfolded the brown wrapping paper.  No clues there.  Just the side of a plain cardboard box.  She cut through the tape on the other end of the package and unfolded the wrapping paper.  Another side of a plain cardboard box.  It looked like she was going to have to unwrap the whole darn thing.  So she slid the scissors through the tape on the top of the box and pulled the paper back.  Another blank.  The flaps of the box were securely taped, but there was no writing, no logo, no printing, no pictures, no company name, nothing.  She picked the box up from the wrapping paper and turned it over.  Son of a gun.  Where does someone get a completely blank box?  She hefted the box a bit with her arms.  Heavier than a typical fruitcake.  Lighter than an iron skillet.  

 She guessed there was no choice now—she’d come this far—she was going to have to open the box to decide whether it was really meant for her or not. Who would be sending her something.  It must be a Christmas present.  Who’d be bringing a present to her apartment and leaving it outside?  Not her parents who lived across the state.  Not her sister who was still in college and should be on her way home to their parents’ house, not coming into the city.  She didn’t have a current boyfriend and the last one left in a huff.  He wouldn’t likely be buying her a present, unless it was something mean.  Surely not.  He wasn’t THAT bad.  She had already exchanged gifts with her gang of girlfriends who met up every two weeks for drinks and gossip.  And the policy at the office was no gifts.  Well, who, then?

 Even though she was getting more and more sure that the package wasn’t meant for her, now her curiosity was heightened, and she was going to have to open the cardboard box.  She delicately dragged the point of the scissors through the tape that held the box flaps together and pulled the flaps back to open the box.

A photo album, it looked like.  A large new photo album with the words “This is Your Life” printed across the front in curliques and squiggles.  Whose life, she wondered.  And turned the cover over to expose the first photos.  Old polaroid shots of a baby.  A cute baby.  A girl, based on the outfits.  And on the next page, a whole series of photos of what must have been a first Christmas for the baby.  Shots of the baby patting the bows on a package, sitting in a big box, hiding under torn Christmas paper.  

And on the next page, more shots of the baby, a toddler now, holding the hand of what must be her mother, a slim woman, girlish, with a pony tail and sneakers.  And here, the child on a merry-go-round, being held on a carasel painted pony by a young man in jeans and a crew neck sweater.  The father?

The next page showed pictures of the child sleeping in a crib, covered with a little quilt, probably made by a grandmother.  I had one just like that, Marian thought.  Just like that one, one that MY grandmother made for me.  In fact, it looks JUST LIKE mine.

Marian raced into her bedroom and frantically took down the box of memorabilia she’d been carting around since she left home for good.  Inside, on top, was the quilt her grandmother had made for her and which she had slept with until she went to elementary school.  She took it back to the living room and compared it to the picture.  It was eery.  So similar.  No, not similar.  Identical.  

 Her vision clouded over and her head began to pound.  She sat down in the chair by the door, on top of her coat and purse.  This was too strange. There were more pages in the album, but she was afraid to look.