Blog Archives

On Dying and Death

5/28/2015

I do something at this stage of my life with terminal cancer that many people find disconcerting. I admit that I know I'm dying and I make no bones about how my death is likely to be long before an expected lifespan.

I read about death. I read about how physical death due to breast cancer is likely to happen. I read about the process of dying.

The reasons are two-fold ... 1) I know I do better if I am prepared for an upcoming event. The more information I have about this, the more I can talk to my children about it and that will help them be better prepared for my death as well. While I hope this time is off in the distant future, I can't count on that. The future is now for me.

2) I am preparing for the time that hospice will be the course of action taken for the end period of my life. I have read several books on hospice, most of which have been very helpful. If you want to know more about hospice, I highly recommend the books by Maggie Callanan (Final Journeys and Final Gifts). I also recommend the website HospiceNet HospiceNet covers a multitude of topics under the headings of Services, Patients, Caregivers, Children and Bereavement.

Atul Gawande has written an amazing book entitled, Being Mortal. He has done in-depth research on how the dying process has changed in North America over the past few decades, and how much there is to learn. A medical doctor, Gawande started trailing those in the medical world who deal with death on a regular basis and was shocked at how little he himself knew of the process.

In 2010, he wrote an article for the New Yorker in which he discusses hospice. He was shadowing a hospice nurse (Creed) as she made her rounds to various patients (Cox) and notes the following:

Outside, I confessed that I was confused by what Creed was doing. A lot of it seemed to be about extending Cox’s life. Wasn’t the goal of hospice to let nature take its course?

“That’s not the goal,” Creed said. The difference between standard medical care and hospice is not the difference between treating and doing nothing, she explained. The difference was in your priorities. In ordinary medicine, the goal is to extend life. We’ll sacrifice the quality of your existence now—by performing surgery, providing chemotherapy, putting you in intensive care—for the chance of gaining time later. Hospice deploys nurses, doctors, and social workers to help people with a fatal illness have the fullest possible lives right now. That means focusing on objectives like freedom from pain and discomfort, or maintaining mental awareness for as long as possible, or getting out with family once in a while. Hospice and palliative-care specialists aren’t much concerned about whether that makes people’s lives longer or shorter.
Letting Go -- What should medicine do when it can’t save your life?

I like how Nurse Creed explained the difference in approaches ... that it's about priorities. That really struck home for me.

I encourage you to read the entire article. It's incredibly long, but incredibly written.

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Keeping on ...

5/17/2015

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The month of May is slipping by ... in fact, it already seems like it's over, in spite of the fact that it's only halfway through! The kids have only three weeks left to their school year and they are neck deep in final projects.

Michael has a soccer tournament in Davis over Memorial Day weekend, so the entire family is going to cheer him on. His team remains undefeated, although this tournament will be a true test of the team's skills. They will be playing in a higher bracket so the push is on.

Rachel will be co-captain of her junior varsity cheer squad, with the option to cheer with the varsity team as well. She is excited about learning leadership skills, as well as continuing on with cheer. She has taken up running and manages to get out several times a week for a 5K or so.

We have a full, yet relaxing summer ahead. In addition to sport-related camps (one per child), there are also church activities and day trips with friends on the calendar. Lots of sleeping in as well. We are planning a family vacation to Mississippi to see my dad and other family members, and then on to the Florida Keys for some snorkeling and relaxing.

I am continuing on the current cancer treatments, daily chemo (one week on/one week off) and a bone-strengthening shot every six weeks. My tumor markers continue to rise, so we know the cancer is increasing somewhere. I will have scans on June 9 to see if anything shows up. My oncologist and I have already discussed varioius treatment options available (there are several) and we are also considering some clinical trials. Of course, the next step all depends upon where the new cancer activity is located.

Overall, I've been feeling fine, although, I have started physical therapy for back issues. There is pressure on back nerves, resulting in cramping and spasms.

I have more toe infections as well and have started antibiotics to deal with that. I'm hoping against hope that I do not have to have a surgical procedure to clean the infection out. In the meantime, my foot is sore, blisters are forming as a result of the chemo and between that and my back ... I'm limping around!

I'm pressing on through the book of Judges and so far, a point that stands out to me, is that no matter how strong we appear to others in our walk with God, we are always susceptible to sin and failure. For example, when most people who are a part of the Christian church think of the story of Gideon, we tend to think of his willingness to ask God for a sign; for his asking God to direct him how to pare down his army from 20,000 to 300 (so that the victory would be God's and not the army's); and for his victory over the Midianites.

Lesser known facts: Following the victory over Midian, Gideon refused an offer to rule over Israel, but accepted 43 pounds of gold earrings as spoils of war, in addition to other trinkets and jewels. He melted the gold and made an ephod (a priestly garment) that was kept in his home and pretty much became an idol that all of Israel paid homage to (and perhaps increased the economy of the town due to all those who came to see it). This ephod became a snare to Gideon and his family, removing focus from God to the the temporary trappings of this world.

Another lesser known fact: Gideon had many, many wives, at least one concubine and had 71 sons (and no telling how many daughters as they weren't counted). I can only imagine that this had an incredible amount to do with expanding his influence through having sons, but little did he know that after Gideon's death, the son of the known concubine would kill 69 of his sons by his wives and the son of the concubine would end up being killed by the sole surviving son of one of his wives! What an incredible mess.

Why does this impact me? Several reasons, but the one that stands out the most is that living a life of Christ is a daily action, not an "achievement" action. Flaws may well taint any achievements of yester-year. Also, just because everyone knows about the good stuff doesn't mean that flaws aren't real and evident to those around you, even if general society isn't aware of them. In other words, one's legacy has a longer reach than can be imagined!

So much to learn ... so little time! It doesn't matter how long I live, there just isn't enough time to understand it all. However, I know God's pleasure in my growth process.

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No reset button for normal

5/14/2015

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There's a phrase in Cancerland that stirs up a lot of debate: "The New Normal." There are those who embrace it and there are those who hate it. I probably fit somewhere in the middle.

"Normal" is defined as "conforming to a standard; usual, typical, or expected." Anyone with cancer will tell you, that there's nothing "usual or typical or expected" about the disease, so the word "normal" shouldn't be used in the same context.

However, now that I'm over three years into this life with cancer, I can say that I have a degree of normalcy. Any treatment I use has a general standard of response and I now pretty much know what to expect from my days. They are typically uneventful and usual and tick along as expected. Sure, I may have different experiences than others, but life with cancer has become "normal" for me.

I've heard others say, "I don't want a new normal ... I want the old normal. I want my old life."

Yes, sometimes, I feel that way, too. At times, I desperately miss the old life I had.

But, there's no reset button for normal. Even if I could go back to my life of over three years ago, it wouldn't be the same. I can't go back to the way things were because they aren't. I've changed and the people in my old life have changed as well.

In spite of having cancer, I think I can genuinely say that this 50s decade of my life is the best decade, so far. I have an amazing life. It's not perfect and there are most definitely things I'd change, but there are many things I wouldn't change.

My life is likely to be shorter than most. I don't have time to lament the loss of what used to be considered normal. I do have time to embrace my current normal, because who knows when that will change and yet a different normal is needed?

Instead of looking for a reset button and instead of hovering over the pause button, I'm pushing "play" with all my energy, pressing on towards the finish line. I don't want to spend my time living only in yesterday (although, nostalgia has its place!), but to look forward to what is ahead, all the while living and loving in the present.

I'm learning it's not the big things that matter, but the entire collection of little things measuring up to a big thing matters. I don't have everything right, nor am I doing things perfectly. But, I think I can say with confidence, that I'm living life out loud. It is my constant prayer that I also love out loud and that my thoughts and actions toward people be a reflection of God's glory.

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Ghost Bike

5/11/2015

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Two weeks ago, traffic snarled at an intersection that is a feeder to one of our local freeways. Traffic was blocked in every direction and a helicopter hovered overhead. The intersection was filled with emergency responders and the accompanying firetrucks, medical vans and police cars. The overall sights and sounds conjured images of a war zone.

And then, this horrifying picture hit social and traditional media.

Photo by: Alan Waples

This intersection is a half mile from a middle school and one mile from two different high schools. Lots of children and teens go through this area. Word quickly got out and parents frantically checked to see if their bicycling child had made it to school okay.

The police almost immediately indicated that the accident didn’t involve a student. Big sigh of relief for the parents. But then the word came that the accident was a fatality. Everyone was stunned. While it wasn’t someone’s younger child, the person who died was someone’s *someone.*

It turns out that the bicycle was ridden by a 77-year-old man who failed to stop at the traffic signal and an oncoming car hit him. He died immediately on scene and several hours after the accident investigation, the intersection was reopened. Life moved on for everyone else except him.

I drove by the intersection yesterday, Mother’s Day, and saw that a Ghost Bike had been put up.

“Ghost bikes are roadside memorials placed by family, friends, and the greater cycling community to remember cyclists who were killed on the streets. The memorial consists of a white bike, usually including a name of the cyclist, and sometimes an array of candles and flowers brought by loved ones. The ghost bike is placed at or near the site of the incident.”

Ghost bikes are powerful imagery. They are, indeed, truly haunting and this particular one reminds me to always be on the alert when I am behind the wheel of a vehicle. One of my greatest fears is to hit someone with my car.

I didn’t know the man who died. His obituary was not made public so I know nothing other than his name and age. My heart breaks for his family and I prayed for them yesterday as the nation celebrated Mother’s Day.

His story is that of being hit by the proverbial bus. No, it wasn’t a bus that hit him, but the impact was just the same. He had no idea his life was going to end that day.

Many times, those of us living with terminal disease, fall into a well of despair, wondering if our lives really matter or if we are really making a difference in the world. One of the main characters of the book, The Fault in Our Stars, stated that he feared oblivion … of being forgotten. I think I fear that, too. But as each day goes on, I am more and more comfortable with being forgotten. I think about my grandfather from Russia … and the fact that I have no clue as to what his parents’ names were or what their lives were like. I know nothing about them and it’s most likely they are unknown to anyone in the 21st century.

But does that change the impact of their life? No. They lived, they loved, they died.

And that’s becoming good enough for me. I’m living the dash … the space between my birth and death … and I’m impacting those in my immediate world. I don’t have to impact the world for all time.

It’s okay to be a ghost bike … a memory. The bicyclist matters. His life makes a difference. If you are reading this blog, then his voice is being heard in places he never imagined.

Watch out for the people around you. They might not be paying attention to what’s happening (i.e. running a red light, both metaphorically and physically), and they need you to put on the brakes. Keep your eyes open for each and every opportunity to love someone else. Loving someone else doesn’t necessarily mean a big action … but can be any action done with big love.

And what does the Lord ask of me? To love mercy, practice justice and to walk humbly with him.

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It's okay to be afraid ...

5/9/2015

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Photo by Kathea Pinto, Creative Commons

When I attended the HealtheVoices conference last month in Jersey City, one piece of advice that struck home to me was to have a "standard" response for the common questions a health advocate receives. I looked at my little kit of information I had for newly diagnosed patients and realized that I was already doing that. It was good to have that reinforced.

My friend, Ann Silberman, at Breast Cancer? But Doctor, I Hate Pink, recently asked on her Facebook page what the first piece of advice you would give to a newly diagnosed early stage breast cancer patient. It inspired me to put all my various bits of information into one list and to throw it out there.   It's not a perfect list, but it's a decent starting point.

1. It’s okay to be afraid.

2. The diagnostics process sucks.

3. Waiting sucks even worse.

4. Please see: http://www.nosurrenderbreastcancersupportforum.com/post/mamm-magazineunderstanding-your-pathology-report-2604522 to better understand your pathology report. This is one of the best explanations I have ever seen and it breaks everything down in easy-to-understand terminology.

5. Don’t be afraid to ask questions. Here are two lists to get you started:

http://www.today.com/health/diagnosed-breast-cancer-8-things-ask-doctor-2D80555416 (Basic questions to get you started.)

http://www.cancer.net/cancer-types/breast-cancer/questions-ask-doctor (A pretty extensive list of questions covering a lot of territory.)

6. Carry a notebook with you to your appointments and write down everything. Don’t try to remember anything. Keep your notebook in a binder with pockets to put handouts and printouts that your doctor may give you.

7. If you feel like you can’t write down and record information, take a trusted person with you to be your scribe.

8. Do not feel a need to tell everyone your circumstances until you are ready to tell people.   When you do tell people, don’t listen to horror stories. When someone talks about “so and so died of breast cancer!” look them in the eye and ask them why they felt it was necessary to tell you this.

9. Do not blame yourself. This is not your fault.

10. Take one day at a time. Some days, take one hour at a time.

11. If you feel completely overwhelmed, ask your doctor if your clinic has a cancer mentor/buddy program. Let your medical team know you are overwhelmed.

12. Do not embrace everything you read on the internet regarding nutrition and health care. Most of them will make you feel that you deserve your cancer due to poor choices on your part. This is not true.

13. Be informed to the extent you are comfortable, but trust your medical team. If you have any reason not to trust them, then you have every right to change your team.

14. Be willing to listen to your doctor and not have ready-made decisions without knowing the facts. For example, many women insist on a mastectomy or a double mastectomy when they are excellent candidates for breast conserving surgery (lumpectomy).

15. Don’t be afraid to ask for a second opinion if you desire one. Many times, that merely entails having the biopsy tissue samples being sent to a different lab.

16. As time goes on, you’ll get accustomed to your new schedule and each appointment will get easier. You’ll become more and more “fluent” in breast cancer language.

17. Blogs, online support groups, physical support groups, individual counseling, family and friends are all excellent tools in dealing with your diagnosis and treatment. However, if you feel that one group isn’t a right fit for you, then feel free to move on.

18. Nurses are your friends. They are the ones who are most familiar with side effects, etc. Be nice to them, even if you do feel crappy.

19. Don’t take vitamins or supplements without checking with your oncologist. Some can negatively interact with various chemotherapy treatments.

20. Just because something is natural doesn’t mean it’s good for you. For example, a friend of mine was told that kale smoothies were good for him and his metastatic prostate cancer. He drank two of them a day … couldn’t hurt, right? Wrong. Kale is loaded with potassium and the overload interfered with his kidney function and he ended up with nephrostomy tubes.

21. Personal note from my experience … my oncologist is always late. I plan on her being late. Yes, my time is also valuable, but I will never forget my first appointment with her. I was a transfer patient from overseas. While I had sent everything possible to her ahead of time, there was still much to go over. My appointment started at 4:00 p.m. and she stayed with me and my husband until 7:00 p.m. A three-hour visit. When she’s late with me now, I remember that … that she’s giving each patient the time and attention needed for their situation.

22. Don’t succumb to the mandate of “be positive, be cheerful, be happy, be strong, be whatever.” The only thing you have to be is yourself. Have safe people around who allow you to be you and who allow you to express whatever you want to express.

23. Be willing to admit you were wrong as you learn more about your own situation. I clearly remember jumping on the nutrition and vitamin bandwagon at the beginning of my diagnosis … thinking I could control my outcome.   It’s okay to change your mind.

24. If you are fond of pink, feel free to wear pink. However, don’t feel pressured to embrace the pink ribbon movement just because it’s a symbol for breast cancer. You will encounter women who love the ribbon and you will find women who hate the ribbon. Find the place you want to be. It’s okay to change your mind on this one, too.

25. Ask for help when needed. There will be many who will say, “Let me know if you need anything.” Quite frankly, I never knew what to do with that statement, but I learned to ask for help when I was too tired or whatever. There is no need to be a martyr.

Would you add anything to this list? Another list will be coming for the newly diagnosed metastatic breast cancer patient.

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Why metastatic breast cancer shouldn't be called a "chronic disease."

5/8/2015

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Tom Hanks, 2009

A few weeks ago, I got into a discussion with someone as to whether or not metastatic breast cancer should be referred to as a chronic disease. She was adamant that it should and I was adamant that it shouldn't. It should be noted that this woman does not have cancer.

The word "chronic" means "persisting for a long time, or constantly recurring." In that respect, metastatic breast cancer fits the bill. However, there's a key word missing from that description that is applied to advanced breast cancer ... terminal. Metastatic breast cancer is a cancer that is persisting for a long time, or is constantly recurring, in which 98% of all patients with the advanced disease, ultimately die of the disease.

Notice how death doesn't enter the average description of the chronic illness.

To give credit to the woman in the discussion, her concern was that if women (and the men with advanced breast cancer as well) didn't identify themselves as chronic patients, then perhaps they wouldn't avail themselves to the resources that are readily available to those dealing with chronic pain and whatnot.

That's a good intention, but it reflects the reality of not living in Cancer Land. She has no real idea what is available to us and she really shouldn't take it upon herself to "lecture" a person with a killer disease about how to refer to her disease. While talking to me about it, she admitted to be arguing with a woman on Twitter about the same topic. The Twitter follower has lived with metastatic breast cancer for 15 years ... which, to the woman in the discussion, made her a chronic patient, not a terminally ill patient.

This is only the tip of the iceberg. There ARE many women living five years or more with Stage IV disease (the official stats are 22%), but the dismal fact remains ... the average prognosis for Stage IV breast cancer is 24 - 36 months. 78% of women with metastatic breast cancer DIE less than five years after their diagnosis, with many passing away in less than three years.

I know many with chronic illnesses and their lives are NOT easy. I see them struggle with crippling pain and I've seen them have to make adjustments to daily living in order to accommodate the disease that has changed their lives. I am not dismissing the seriousness of chronic illness. To be frank, in spite of my having cancer, I live a mostly normal life and many of my friends with chronic illnesses cannot make the same claim.

One illness that is often tossed up as an example living with a chronic disease is diabetes. Diabetes is not to be messed with. Not following the appropriate treatment plan can result in circulation problems that can end up in amputations and/or blindness. It's serious stuff. However, since we see so many people successfully living with diabetes, many forget the damage the disease can do. When one is diagnosed with diabetes, many just kind of shrug and say, "Diet, exercise and meds, if necessary, are all you need." Naturally, this excludes the folks who have Type 1 diabetes which means they, quite simply don't have the proper insulin production their body needs. No amount of diet and exercise will do anything for that ... that person needs insulin.

This is a long intro to a brief review of Rita Wilson's update on her breast cancer diagnosis. She was recently interviewed by the New York Times and gave candid comments on her experience. She encourages people to get second opinions and tells what it's like to have the feeling that people are staring at your breasts, evaluating if you look natural or not.

That's all fine and good ... it's her story and her experience with cancer up to now. I truly hope that she remains free of cancer for the rest of her days.

In the interview, she talks about the support she received from her husband, Tom Hanks. The writer of the article says, "Neither she nor Mr. Hanks had ever been seriously ill before, so it was new territory."

Therein lies the rub. Tom Hanks has been dealing with elevated glucose levels since he was 36 years old and was diagnosed as a diabetic over two years ago. He has a chronic condition ... but to the eyes of the author, he's not seriously ill (and, technically speaking, he's not). Yet, people want breast cancer to be put into the same category as diabetes?

It's a simple word, but if metastatic breast cancer is classified as merely something that is long-lasting or constantly recurring, then the reality of it being a terminal illness gets lost in the shuffle of words. It becomes, as the chronic woman with the long-lived Twitter follower mentioned above, a not-so-serious disease. It is not taken seriously.

There's just no cushioning the fact that metastatic breast cancer kills. To hide that fact behind a "comforting" word is to do a disservice to those struggling to see the next day and to those who, for now, live normal lives.

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Profiting from breast cancer

5/4/2015

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Many have long complained about the pharmaceutical industry (and less obviously, the medical industry at large) for making a profit from disease. The age-old conspiracy theory is summed up as “Big Pharma doesn’t want you to know about *this* because they would lose money if you did.” (Insert any alternative plan for the word, *this*.)

My husband works in research and development for medical devices. In spite of popular opinion, those involved in the medical world are not rolling in money. Yes, you have the few who are extremely wealthy, but overall? That just isn’t the case.

We live a modest life, reflective of our middle-class income. We rent our home, we drive cars that are over ten years old (One car is older than our teenage children!) and we make choices within our reach.

Multiply this by the thousands of people involved in medical research. Most of them work very long hours (My husband seldom works less than 60 hours a week.) and most of them usually have the end user (the sick patient) in mind.

While the industry as a whole is about profit, I wouldn’t say that everyone in the medical industry is about money. They are providing a much needed and necessary service, which for some, is the difference between life and death and for me, is the difference between living weeks, months or years.

So, I’m forgiving when it comes to medical products. I do think the United States needs insurance reform more than it needs health reform, but that’s a whole ‘nother topic for another day.

BUT … here is the heart of this post … I have strong complaints and extreme anger over other industries profiting off the disease that is taking my life and is threatening the lives of so many others.

I sat on this post for a few days because I’ve learned to not say something when I am so angry. However, after sitting on it, I’m going to throw it out there.

One of my major complaints about the pink ribbon movement is how it has become an excuse to slap a ribbon on a product in order to line corporate pockets, all the while playing the sympathies of the shopping public. The pink ribbon is marketed to appeal emotionally to anyone impacted by breast cancer, whether it be a patient or a friend/family member of a patient. The starter of the whole thing was a sister of a breast cancer patient who had a strong desire to see breast cancer cured … but the movement got away from that intention and it has become a sham. The good intentions of the sister doesn’t change the fact that the pink ribbon is a shopping mecca for vendors wanting to make money because people are sick.

A certain web page has been crossing my newsfeed for quite some time. I finally took the time to check it out and I am appalled at what it is doing. It calls itself a “one-of-a-kind high-end shopping and community platform that provides women at every breast cancer treatment phase with all of their lifestyle needs. Our mission is to help women facing breast cancer better their lives with style.” They don’t have a pink ribbon on their products … they boldly use the words “breast cancer” instead.

This “high-end style” claim is what makes me angry. According to their website, a newly diagnosed person “must have” (Yes, it’s a tab called “Must haves for the newly diagnosed.”) $30 pill boxes, $70 planners/calendars/journals/water bottles, $42 camisoles, and get this … a $185 linen blouse that needs to be dry cleaned! If I bought all their just diagnosed essentials, I would have to spend $427.

Seriously? These are must haves? This site links itself to a well-known breast cancer information site and it also has “guardians” to give advice to others. They showcase profiles of people with breast cancer. This is their justification. “We’re helping women and giving them voice on the internet; therefore, it’s okay to charge so much money for these things.”

In other words … they are doing the EXACT SAME THING as the pink ribbon movement, but in an even more insidious way.

NOTHING on their page talks about any donations going anywhere for anyone with breast cancer. It is 100% about making money off of those with breast cancer. By targeting a woman’s vanity with “must haves” and “essentials,” the implicit message is, “If you aren’t doing breast cancer this way, then you’re doing breast cancer wrong.” That’s the entire idea of marketing (I was a marketing major.) and no amount of denying this changes the reality.

The not-so-subtle message of this site is “Live it up! You have breast cancer! Let us help you spend your money on things you either don’t need or can get for cheaper elsewhere.” They call it “high-end” or “style.” I call it exploitation.

Surgery “essentials” include a $70 shower shirt for someone with drains … and is modeled in a shower by someone who very obviously does NOT have drains! (I’ve heard the Dollar Tree’s $1 rain poncho works just as well.)

Chemotherapy “essentials” include $21 fans. No, not electric fans, but a hand-held accordion style fan that can, again, be purchased for a dollar at a dollar store. There are $54 turbans.

But hey ... you have breast cancer! This is the time for you to absolutely pamper yourself with such expensive items. After all, you may die! Wouldn’t be so much better for you to die with a $2,068 wig on your head?

Yes, everyone has a right to make a profit. No one forces anyone to buy these goods. It’s all about choice. However, when I know of women who are challenged to pick between one cancer treatment versus another based on the cost, I am shocked and angered that there are those profiting off those same women. NO amount of justification makes up for the simple hard fact … too much money is being charged for unnecessary products being marketed as “you must have this in order to survive your breast cancer diagnosis.”

Ribbon or no ribbon, it’s the same. Stop the insanity.

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Resilience

5/2/2015

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Last night, I was one of the speakers at an annual event in the San Francisco Bay Area, "Honoring Life," sponsored by the Bay Area Cancer Connections (BCC). I was invited by Debbie Rosenberg, one of the facilitators for the metastatic breast cancer support group that I attend at BCC. Debbie has been a facilitator for this group since it began 21 years ago. While she does not have metastatic breast cancer, Debbie has a heart for women going through terminal illness to give them a safe place to be anyone they need to be at the moment. We share laughter, tears, stories about our kids, parents and pets. We swear, we pray, we get angry and we get resigned to the fate that has been tossed our way. Debbie opens herself up to a world of hurt each time she meets us ... because she is the one who is being left behind. And that's a pain in and of itself.

But Debbie has resilience, just like the rest of us. Her love knows no bounds.

The following is the bulk of what I shared last night. As a teacher, I'm quite accustomed to "winging it," so I don't have the one-liners that came to me as well. However, the heart of the message is the same: Live each day until you have no days left to live.

Vickie Young Wen and Debbie Rosenberg, co-speakers at the Bay Area Cancer Connections annual "Honoring Life" event, May 1.

One of the most common descriptions of the word, “resilience” is “to recover quickly from a setback.”

This setback can be something minor, like a failed test, a botched job interview or a bad hair day. (Although, for a cancer patient, any hair day is a good hair day!) However, for most, the term is used to describe a recovery from a catastrophic or traumatic event.

For someone living with metastatic breast cancer, there is no “recovery.” There may be the rare person or two -- the rare 2% that reach no evidence of disease for the rest of their lives, but for 98% of those with metastatic breast cancer, there is no recovery.

However, that doesn’t mean there isn’t resilience.

That doesn’t mean we don’t bounce back.

We do.

Every single day, we bounce back. Simply getting out of bed can be a victory over the previous day’s challenges.

Putting shoes on blistered feet and going for a walk is an act of resilience.

Eating three small meals instead of two and keeping them down … a triumph.

We bounce and we bounce and we bounce. Some days, our bounce is higher than other days. Some days, there is no bounce and we are flat.

But we press on.

The past 18 months have been difficult for the metastatic breast cancer support group at the Bay Area Cancer Connections. We’ve taken a huge hit.

I started attending this group in May 2013, shortly after I finished treatment for a broken vertebrae in my neck due to metastatic breast cancer. I remember who I met that night and most of them are gone.

Franca. Catherine. Shirley. Michelle. Carole. Kate. Mary Margaret. Sheila. Brigitte.

I remember Franca, a beautiful woman from Italy who pronounced liver as “leever.” As an English teacher, that always made me smile. Her infectious smile was a joy to behold, but as treatment after treatment failed her, she began to ask the question, “What’s the use? What does it all mean?” She left us in December 2013.

Catherine, a delightful young mother from France, asked how in the world could she have metastatic disease? According to all the statistics, she did everything “right,” but here she was, at age 44, dying. The last time I saw her was at Franca’s memorial service and she left us shortly afterwards.

Shirley came and went so quickly that it made our heads spin. She was only able to come to the group a few times before disease took her life, leaving behind two elementary school aged children. We barely got to know her as disease spread so quickly and she was so sick.

Michelle. Diagnosed with brain mets, she defied her six-months prognosis and lived for three years. However, as disease moved through her system, she quietly slipped away, without giving us a chance to say goodbye.

Carole. A gracious woman who didn’t come often, but who exhibited a quiet strength when she did. The last time I saw her was also at a memorial service. Devoted to her family, she protected them as much as she could from the realities of her disease until it was no longer possible to do so.

Kate. Declared free of disease for nine years, Kate was convince any new cancer would be back to the liver where she had metastases before. That wasn’t the case. Cancer exploded into her abdominal cavity, causing a multitude of problems. Kate had long ago drawn a line in the sand, declaring if she ever needed kidney dialysis, that she would stop all treatment. That day came … she stopped treatments … and she died of kidney failure due to metastatic breast cancer.

Mary Margaret. Wise Mary Margaret, whose son jokingly dubbed our group, “The Loser Ladies Club,” used our weekly meetings as her social time. She dealt with a multitude of issues, but was always giving to others and was always listening to others’ fears. She was a calm presence with a wicked sense of humor, as noted when her skull mets were referred to as “bony mets,” she started to sing, “Bony Maroni.” Look it up on Youtube and you’ll see a small picture of Mary Margaret’s spirit. Mary Margaret left us in August.

Sheila was diagnosed with metastatic breast cancer four years and eight months after her primary diagnosis. Her first visit to our group was filled with fear and anger. Her cancer had changed over the years and became something that was very hard to treat and had poor response to everything. She did make a dream come true, though … she celebrated her 50th birthday in Paris, on Bastille Day, something she always wanted to do. She died six weeks later, shortly after Mary Margaret.

Brigitte was the picture of grace and if anyone ever captured the image of a renaissance woman, it was her. A world traveler, speaker of several languages, a pilot, a woman who requested that champagne and chocolate be served at her funeral … that captures Brigitte’s spirit. She’s the last of our group to leave in 2014.

The average age of these women is 52 years old. That’s how old I am now. My mother died of metastatic breast cancer at age 52, so this is a sobering age for me.

Each one of these deaths reduces the bounce of those of us who are still living. But … we keep bouncing back. We wake up each day, using our voices to not only tell our stories, but to also keep the voices of these women alive as well. While these women are gone, their resilience lives on in each of us. Nary a week goes by without one of their names being mentioned … because their names are carved on our hearts.

We are the faces of metastatic breast cancer. We are daughters, sisters, aunts, mothers, grandmothers, friends. We are you.

We are the faces of resilience.

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