Here we go again

Cancer has picked the wrong b*^tch!

Five words: Cancer sucks. Love is great.

As I wrote last week, I had some major scanxiety leading up to my PET scan. I knew something was wrong. Unfortunately, I was right. There was progression, which means my treatment, which I had been on a record time of 20 months, stopped working. It was something I knew would happen eventually. Throughout my almost seven years of living with stage IV breast cancer, I’ve been on 12 different treatments. Somehow, the sneaky bastards/aka cancer cells find a way to survive and flex their might by growing.

Funny how my mind works. This is inconvenient timing. I’m on the cusp of releasing my new book, Miracle Survivors, which will available on Nov. 11. I have a big launch party planned. I’m traveling to LA for a series of events and book signings and one in Indianapolis  in December. I need to plug this book. I don’t have the time for this.

I gave myself maybe 15 minutes to cry, then as I usually do when faced with a crisis, I sprung into action. The book can wait. My first step was to check into the trial for the most promising drug I’ve found for estrogen-receptive breast cancer: expanded access for it’s new targeted drug, palbociclib. I  also asked my doctor to help me get on the trial and get the ball rolling to get a biopsy for the Foundation One genomic test to see if I qualify for other targeted treatments or other drugs .

Roadblock #1: After contacting Pfeizer about palbociclib, they tell me there are no trial sites yet. As a back-up, I go to my account on bctrials.org and find several other trials for which I’d qualify. Thank God for social media. I posted about it on one of the several metastatic groups I belong to on Facebook and a member provided an updated link that shows that palbociclib is actually being provided at three oncology clinics on the west coast.

That was Friday.That night I was scheduled to be a speaker at breast cancer fundraiser. It was very healing and the people at the event were so kind and supportive.  The weather was beautiful  over the weekend, and we were busy with my daughter’s band competition (they are going to state!) and other things. So I gave things a rest.

I spent Monday doing more research and networking. Yesterday, I went to see my oncologist. He had the same problem I had; they told him there were no sites available (Roadblock #2). Luckily I had the information about the west coast trials. Later in the day, after posting about it on Facebook again, I was overwhelmed by the love, support and information from my “peeps.” I got offers from friends and people I don’t even know except from Facebook to stay at their homes in the event I need to go out west. One friend, whom I mentored through Imerman Angels, offered information about a friend who received compassionate use of the drug. Another Facebook friend messaged me with the name and number of a doctor who works at the Portland facility holding the trial.

I texted the information to my oncologist, who responded,  telling me I’m the most connected person he knows. The truth is,  I’m blessed to know some amazing cancer survivors and advocates who know what it’s like to struggle with this disease and are always willing to help. It’s part of the cycle – you give, you receive, you give …

So today, I wait. I have a goal, and I’m focused. As my husband Mike says, “whatever it takes.” I’ve got too much to do to let cancer get in the way. I have a daughter who is turning 16 this February, and I’m not going anywhere. I will go to the ends of the earth to be here for her. If I have to go across the country, I will do it.  I know I’m blessed to have so many prayers and support, and it is carrying me through this.

Lessons  learned:

  • Do your research at all times, even when you’re doing well. It makes it a lot easier when you receive bad news.
  • Connect on social media, especially metastatic groups where patients-in-the-know congregate.
  • Put it out there to your friends, too. You’ll be surprised at the flood of support that comes your way.
  • Don’t give up or be discouraged. Sometimes you’ll get faulty information from someone who just happens to answer the phone and isn’t informed.
  • Have faith. It will carry you through the road blocks and fear.



Scan time once again

Going in the tube, not down the tube!

I’ve been spending time trying to spread awareness about metastatic breast cancer this month. I feel like I’m boring and annoying people with it. But I still realize there is work to be done.  Some people do  not realize that I (and most everyone with stage IV cancer of any type) go through the ritual of regular scans. Yes, every three or four months, I lie in a scanner, trying not to itch or think about when my treatment stops working and  if this is the end of the line.

I”ve lost count of how many scans I’ve received in almost seven years, but I think I deserve a Frequent PET Scan card. Perhaps they could give out free cups or coffee or a nice breakfast after all that fasting. A free movie while you’re waiting for the toxic, radioactive material to surge through your body? Yes, it helps to have gallows humor in this situation.

Yesterday, as I was lying in the scanner, I did my usual positive affirmations and prayers. I also prepared to improve my chances; refraining from exercise or sugar that could cause the thing to light up unnecessarily. But I know that the only thing I can do now is wait, which really, as Tom Petty puts it, is the hard part. It’s become less scary over the years. I have some experiences under my belt. I know a bad scan is not the end of the world; I can try another treatment. I take the matter into my own hands by picking up the results rather than waiting for my oncologist to give me the news. It almost becomes routine … almost.

The truth is, every pain and ache sends me to a dark place these days. I’m fine when I’m feeling well, but yesterday after breaking my long fast, I had shooting, excruciating pains in my abdomen. It went away, but I know that I have tumors in that area, and I wonder if they have grown. So I keep myself busy, and thankfully I have my book launch coming. I’m planning talks and book signings and pitching my story to the media. Click on this LINK to see my latest. I come across as so confident, but the fear is there. I’d be lying and doing a disservice to everyone if I didn’t share that. I know there are many of you facing the same thing. It’s a side effect of having stage IV cancer.

Mark Roby, a fellow stage IV survivor and naturopath who is in my book, emphasizes having a “triad of survival,” basically a plan B and C in place in case a treatment stops working. I have this in my mind and will suggest options to my oncologists. Pfeizer has approved  expanded access for it’s new targeted drug,  palbociclib, for HER-negative and positive patients. I also am interested in a trial at Ohio State, which is investigating the use of genomic testing to determine the best treatments that would otherwise not be recommended. I want targeted treatments, like the one I’m on now, Afinitor and Aromasin. I’m NOT interested in the “spin-the-bottle” determination of regular chemo. Been there, done that.

Having this information helps eliminate some of the fear for me – again my plug for being a proactive patient. I’m also going to renew my holistic efforts that I’ve been neglecting lately. I’m going back on my Vitamin D supplements, start drinking green tea again, get more use of my Y membership … I know everything I do helps.

So for now, I wait.  The best-case scenario is my current treatment is still working. Worst-case scenario, I have to switch. I know I’m not in this alone and that God (and good research) is guiding me. Thank you all for your support and prayers.



Miracle Survivor Dakota Neal: beating the odds of a rare sarcoma

Stage IV cancer doesn't stop Dakota Neal from making the most of her life and helping others.

I’m getting very excited about the release of new book, Miracle Survivors: Beating the Odds of Incurable Cancer, due out Nov. 11 by Skyhorse Publishing!  It was a labor of love and very healing for me to interview and share the stories of extraordinary people who show that statistics are just numbers. I wrote this book and my previous book, From Incurable to Incredible, out of my own experience as a stage IV breast cancer survivor. I wanted to find hope that I could live well with, if not beat, cancer and knew that sharing people’s experiences was the best way to illustrate that all things are possible.

This week, I’ll start a series of excerpts of stories from book. Today we meet Dakota Neal, who was diagnosed  in 2005 with leiomyosarcoma, a rare and lethal cancer (average survival rate of three to five years). The sarcoma  usually occurs in smooth muscle connective tissue, but in Dakota’s case, was found on her tibia. She went through a leg amputation and aggressive treatment  at Stanford University. But the cancer returned to her lungs in 2009, making it stage 4 cancer.

Dakota recalls, “I thought I had this beat, but obviously I didn’t so I thought, OK, we did this once; we’re going to do this again. One step at a time, let’s go for it. Rather than looking in the mirror and wondering why this was happening to me, I thought about how I was going to live my life going forward and how my kids were going to see me. … I wanted to show them how to deal with obstacles that may come their way later in life.”

Her doctor recommended a trial drug and after six months of treatment they removed the part of her lung that was affected. All the cancer cells had died. She has shown no evidence of disease since.

Today, Dakota gives back by helping spread the word about cancer through an organization called Carrie’s Touch, which provides education, outreach, support and advocacy for breast cancer survivors with emphasis on the African American community.

“Cancer is cancer. It’s a fight that touches a lot of people, whether it’s breast cancer, a sarcoma, or prostate cancer. We all have families, dreams, and ups and downs in our life, so we have to give back. When another person is down, you need to pick them up and I believe you are blessed in return.

“I think the African American community is a little more reserved about cancer. Many people don’t want to talk about it; it’s taboo. I think people are more likely to talk to me about my cancer because it’s a physical condition they can see. A lot of people initially think I lost my leg through an accident or diabetes, so they will feel more comfortable asking me what happened and a conversation about cancer pursues from that point. My oncologist sometimes asks me to talk to people at the clinic who have been diagnosed with a sarcoma. A mom of a little girl who had bone cancer wanted me to talk to her about it.  She was so strong, she inspired me.  And I’ve had a lot of people ask me to just sit and talk to somebody that had been recently diagnosed with cancer.

“I share my experience so they know that there is hope. I’ll say, ‘Cancer took my leg, but life is good. I’m blessed and I’m going forward and living my life. Cancer can take my limb, but it can’t take who I am as a person. It’s not gonna hold me down!’

Although Miracle Survivors is not due out until November, you can pre-order your copy of on Amazon now by clicking on this LINK. If you’d like to meet me in person and receive a signed copy, keep checking the events page for book signing listings.

 



Pinktober survival tips

There are plenty of other colors in October than pink! Get out and enjoy them!

I realize that my life is a bit cancer-centric. After all, I write about cancer, give talks about cancer and help and support cancer survivors. And, oh yeah, I’m living with cancer. Add Pinktober to this, and there seems to be no escape. Thank God for my family, who bring me balance. Mike comes home and we talk about his workday. Chrissy tells me about all the things happening at school and her extracurricular activities. Sometimes I’m even privy to some social gossip – who’s dating who, who likes who, etc. It’s a wonderful break. Chrissy is attending homecoming dance this weekend, and I’m so excited to take pictures of her and her date all dressed up!

Nature is another way to escape. We’ve had some day trips lately to see Chrissy’s band competitions. and we get to enjoy the fall color and weather. And it’s great to go to church and listen to positive messages and enjoy some small talk with friends after the service. I also have some TV shows I love that are a great diversion: Homeland, Modern Family, Blacklist, among others. Can you believe how Carrie has NO maternal instincts? I It’s all a welcome escape from the realities facing me every day.

The fact is I’m much more than cancer. There is more to my life than my disease, and this applies to all cancer survivors. I do appreciate the awareness and funds going to breast cancer this month, even though I take issue with it’s focus and message (see my previous post). But sometimes we need a break. Here are some survival tips to make October a little more balanced.

  • Get out in nature! The fall foliage is orange, red, yellow … and not PINK!
  • Declare a ‘no cancer zone’ when getting together with friends. You can talk about anything but cancer.
  • Indulge in your favorite hobby – gardening, scrap booking, photography
  • Go through old photos and remember all the times before cancer. Turn on music from the era, and transport yourself back in time!
  • Exercise. It’s great for your physical and mental health.
  • Focus on the moment, right now and the blessings in your life. – your family, friends, material stability, etc.
  • Celebrate Halloween! Decorate your house, have a party, drink apple cider. My favorite part is passing out candy and seeing all the cute kids’ costumes

Whatever you do, remember that there’s more to life – and you – than cancer.



Crashing the Pink Party

The fight is not over for many of us

It’s the first day of October. Let the pink games begin! For many of us with metastatic breast cancer, October is like a party we weren’t invited to join. You’d think, wow, they are devoting the whole month of October to you! But it doesn’t really feel that way when you hear that all you need to do is catch it early and you’ll be fine! Many (not all) organizations and marketers who profit from pink products want to ease people’s fears and make the message simple. They don’t want to hear the complicated and scary message that early detection, while helpful, is not a cure.

About 20-30 percent of breast cancers become stage 4, and many, like me, caught it early. I was stage 2 with no lymph node involvement when I was first diagnosed in 2002. Yet  metastatic breast cancer only accounts for about five percent of total research funding. We don’t know what causes metastases yet, and we have yet to find a  treatment that will truly make stage IV a chronic, if not curable disease.

Usually I try not to be a downer about this. After all, I believe in hope, and I am seeing progress in the development of targeted drugs for ER- and HER-positive cancers. And people like me are living longer. Maybe I’m just a little tired of losing friends – three in the last month, for God’s sake!

When we remember 9/11, we focus on the people lost. According to Breastcancer.org, about 40,000 women (men, too) in the U.S. are expected to die in 2014 from breast cancer. That’s about 13 times the people who died on that tragic day. The numbers are decreasing but not fast enough.

You’d have to live under a rock not to be ‘aware’ of breast cancer with this pink madness. We have done a great job with awareness and screening; now is the time to find a cure.

I never like to state a problem without a solution. I have been listing a Metastatic Breast Cancer Myth-Buster a day up to Oct. 13 – Metastatic Breast Cancer Awareness Day on my Facebook fan page. Here ares just a few things you can do:

  • Stand up and be counted! Tweet, post on Facebook, let friends know your story.
  • Take part in an MBC Awareness Campaign.  Novartis is sponsoring the Thunderclap Campaign, asking survivors to Tweet and post on Facebook and Tumbler by simply clicking on This Link. AstraZeneca is hosting a nationwide photo-sharing campaign, women with MBC are posting photos of themselves on Twitter and other social media platforms using the hashtag #MBCStrength. Photos posted on Twitter and tagged with #MBCStrength will also be considered for a display in Times Square in New York City on  Metastatic Breast Cancer Awareness Day.
  • Share a Metastatic Myth-Buster by visiting my Facebook fan page.
  • Donate to charities that truly support metastatic breast cancer research, not padding the pockets of their rich executives. MetaVivor.org has a fund designated specifically for MBC. Beware, there are people out there trying to scam people with phony organizations. To check the quality and legitimacy of a nonprofit organization, go to Guidestar and Charity Navigator

UPDATE: Social media works! So many stage IV breast cancer survivors contacted the TODAY show that they included a segment on a young metastatic woman for their Pink Power segment. They even mentioned how people were contacting them saying, “Don’t forget about us” and spoke about the need for a cure!

 



Appreciation in the face of loss

My mom, Roz, at age 16 with my grandpa Leo

It’s been a hell of a week. Late Thursday night I received a call from my mom’s nursing home that she had a bad day and they didn’t know what was wrong. They thought she had pneumonia, something she has had frequently in the past. Did I want to come? I told the nurse I was afraid of contracting it with my compromised immune system. She agreed.

Although my mom was on Hospice, I wasn’t that concerned. She had bounced back so many times, even flat-lining a few times and recovering afterwards. I just saw her the previous week and she seemed to be doing great. In fact, it was by far the best visit we had ever had. We visited with the Hospice chaplain and I was finally able to wheel her out of her room and take her to the retirement community’s store, getting her whatever she needed. I brought old pictures and put them in albums and on her wall.

My relationship with my mom has always been complicated. I won’t get into details, but let’s just say it has been a hard road. She battled prescription drug addiction and mental illness. I always felt like I was her mother rather than vice versa. Usually after I visited, she would call with complaints and wanting more clothes, food, etc., etc.  But after this visit, she told me how much she loved me and appreciated the visit. I mentioned to Mike how strange it was. I was so optimistic that we could have more visits like that. In fact, I was going to go visit her the next day until I got that call.

After taking Chrissy to school Friday morning, the nurse called. “Your mom passed away 10 minutes ago.” They had tried calling me earlier but I was asleep and didn’t hear the phone. I screamed, “Noooooo!” I wasn’t ready yet. I hadn’t healed our relationship yet. Like it or not, she was a big part of my life. Now she is gone.

I’ve received a lot of love and support since then. So many people have told me that they, too, had complicated relationships with their mothers. I’ve worked for decades to reconcile our issues and finally feel at peace. As Mike said, maybe that last visit was the closure I longed for. The fact that I was able to finally convince her to leave her unsafe apartment and live at a quality retirement community was as Jewish people say, “a mitzvah.” God blessed me by  helping me to release resentment and anger and just accept who she was … that she did the best she could.

Mike had planned a trip for us to our college alma mater that weekend. It was fun and a good diversion. On Sunday morning, we learned my good friend Giuseppa Robinson passed away from breast cancer.  She was a beautiful, caring and warm friend, mother and wife. I had already mourned for weeks as I knew her death was imminent. But it still hurts. I am blessed to be her friend the past few years, and already miss her terribly. It seems surreal that I can’t pick up the phone and call her or message her on Facebook. She was only 41 with a six-year-old child. I cannot understand it. But I know I have to accept it.

My friends from Pink Ribbon Girls and other segments of my life were there at the visitation last night. We were there to comfort each other. I am so lucky to have such a wonderful network of friends. I don’t know what I’d do without them.

Life goes on. I’ve been busy getting ready for the launch of my new book, Miracle Survivors, in November. I made a new friend yesterday; someone I only knew on Facebook previously. I still need to clean our kitchen.

Last weekend, my 15-year-old daughter Chrissy and I went shopping for a homecoming dress. She was so excited and appreciative of getting the dress of her dreams. This is her first dance with a date. I cannot express in words how blessed I am to be here to witness yet another wonderful milestone. It’s one of the gifts of cancer — seeing everything in a new light of appreciation and wonder. Like a friend said last night. “We get to do these things. Not have to do these things.” It is never taken for granted.



Life, death and love: seeking light in the darkness

Love and light give life meaning.

Even though I walk through the darkest valley, I fear no evil; for you are with me; your rod and staff- they comfort me.  - Psalm 23:4

I read this today in my Daily Word. The affirmation was “The peace of God comforts me.” I was crying out for comfort on Facebook the other day, saying I wish I had a Jewish mother to feed me matzoh ball soup. Seems like God is speaking out to me, letting me know She’s my Jewish mother.

I’ve talked before about the deaths of friends to cancer. The past few weeks have been especially brutal. I learned that Peter Devereaux, a shining example of courage, kindness and love passed away. His story is one that I share in my upcoming book, Miracle Survivors. Sadly he will not get to see it published or his teenage daughter graduate high school. Then I just happened onto another friend’s Facebook page to learn she passed away two days previously (Sept. 11). Patti Hoffman was only 44 and left behind two young boys. This week, one of my dearest friends, Giuseppa Robinson, has entered hospice care. She’s only 41 and has a six-year-old son.

I’m finding the only people who can really understand being surrounded by this tornado-like force of mortality are fellow stage IV cancer survivors (and people who love them), soldiers in battle, and older adults.  The rest of the world seems oblivious to all this dying. I started doubting my own mission. How can I write about hope when all of these people are dying?

The answer is this: Even in the darkness, there is light. It is about how each person lives life, no matter it’s length, that brightens this world and makes life worth living. I’m halfway through Viktor E. Frankl’s amazing book, Man’s Search for Meaning. A holocaust survivor and psychiatrist, Frankl shares how even in the midst of the most horrible circumstances, some people found ways to hang on to their humanity. One man walked from barrack to barrack to comfort newcomers. Another man shared his meager piece of bread with others. And then were some prisoners who, to get more privileges, served as guards and viciously tortured inmates.

Among so many profound quotes, Frankl states, “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way … “Life is never made unbearable by circumstances, but only by lack of meaning and purpose.”

So what is that purpose? Is it writing a best-selling book? Raising millions of dollars for cancer research? It doesn’t have to be something grand, and you don’t have to be famous. There is meaning and purpose is in how we love each other. As Frankl observes, “The truth – that Love is the ultimate and highest goal to which man can aspire.”

When I was first diagnosed with stage IV cancer in Feb. 2008, a  woman who was dying of breast cancer told me, “Don’t hang around cancer survivors. Hang around with ‘normal’ people.” I’m so glad I didn’t take her advice. For it’s in the very act of loving and supporting each other that gives life meaning. It’s excruciating to lose friends, but I would not trade these friendships for anything. They have been the most intense friendships I’ve ever had. We all share the challenges and joy of living life in the midst of uncertainty. Of loving our family and friends, knowing there is no guarantee how long we’ll be there for them. Of the gratitude for simple things that many people take for granted.

It has given my life a sense of purpose by sharing stories of these individuals who have made such a mark in the world simply by how they choose to live their lives in the midst of such adversity. It has given me hope and inspiration. And if I’ve helped anyone with my work, I know I have chosen the right path.

 



Happy fifth anniversary to Miracle Survivors!

Raising a glass to five years of blogging!

I realized that today marks five years since I started my blog! On Sept. 11, 2009, I stuck my toe into the blogosphere with a blog post titled, “This blog has landed.” I was going to share the post, but I can’t find it! One of my plans is to make some changes to the blog to make it more searchable and freshen the design.

So what was it like five years ago when I started Miracle Survivors? Here’s an excerpt from a post on Sept. 28, 2009:

I just returned from the oncologist who reported my scan results. My bone scan was clear, but  the PET scan showed some of the pesky spots came back in my armpit and one on my liver. He said on a scale of 1 – 100, the amount of cancer was a five, and he feels confident that we will again knock this back into remission. I’ll be getting chemo once a week for six weeks, then 2 weeks off and another six weeks. Then I’ll get scanned again.

Mike, my husband, and I found out that one of the nation’s leading breast cancer oncologists is two hours away from here. We plan on going for a second opinion. Linda, someone who has seen her share of chemo visits and is very involved in the breast cancer advocacy, shared his number. This is another perk of being in the chemo suite – seeing people like Linda perservere.

While Linda and I were chatting, a lovely young woman named Heather approached her.  I noticed Heather walked on crutches, then looked down and saw she had only one leg.  Linda was joking with her about being  all over the news lately. Heather earned this publicity by being the top fund-raiser at our local Komen Foundation Race for the Cure.

When I started interviewing survivors for my book, I thought people in remission were the only “miracle survivors.” Now I know the miracle is not in the scan results but in the person. It’s not what the results say, but the results you accomplish in life.

Looking back on this, I was struck by a couple of things. One was the PET scan results ( I no longer have spots in my armpit and liver, but do have some more pesky spots in my abdominal area) and the power of my oncologist’s optimism. That is one reason why I have stuck with him all of these years. Two, both Linda and Heather passed away a few years ago. Which brings me to the last line , which really sums up my mission and what I’m trying to convey in my books and this blog. I’ve had many friends pass away over the years, including a few that are featured in my books. Does that make them any less than miracles? Did they somehow lose their battles? Absolutely not. Their very essence and the mark they have left on the world and those who loved them — that’ s what makes them incredible.

I was learning about the power of connection, hope and practical things like getting second opinions even way back then. Much has transpired  over the last five years – too much to sum up in a brief blog post. I am grateful I am still here to write this blog  and that you have come along for the ride. It is my vision to do a 10th anniversary post … if they still have blogs then!

 



It takes a village to save your life

Some fellow advanced breast cancer survivors and I at a recent gathering

Sometimes I get down on myself for being on Facebook so much, and my family teases me about it, too. Granted sometimes I’m watching silly cat and dog videos, but I was reminded this week of the importance of the connections I’ve made, especially with other stage IV survivors. A very dear friend of mine who has stage IV, triple negative breast cancer has been declining for months and is now facing a life-threatening crisis. Her local oncologist has given up on her and told her, “Well you’ve put up a good fight …” She was basically telling my friend to go home and die. My friend  has a six-year-old son and still wants to fight, but she was feeling too sick and overwhelmed to direct her care the way it needed to be.

I felt helpless, wondering what I could do for her. Then I remembered I belong to several groups on Facebook dedicated to stage IV breast cancer. I posted on all of them, asking if they could recommend an oncologist/cancer center that specialized in triple negative breast cancer. Right away I received responses from all kinds of people, most I didn’t even know. And thanks to our  friend, Darlene Gant, another stage IV sister who advocates for other patients through H.O.P.E organization, we narrowed down the options for my friend and her husband. Darlene helped with setting up the appointments, providing intake information,  and gave her husband, step-by-step actions they need to take to get the ball moving ASAP. They now have a plan in place and a bit of hope.

This illustrates the power of social media and connections. There is much to learn from other cancer survivors who know the ropes and can help point you in the right direction. In this instance, it was helping find the best oncologists, genomic testing, and clinical trials. Online networking and meeting others at various cancer conferences have  helped save my life several times. Four years ago, through Nancy Hamm (who was in my first book), I learned about Selective Internal Radiation Therapy, a procedure which involved aiming radioactive beads directly to my liver tumor. Knock on wood, it has never come back. Another friend, Krysti Hughett, told me about bctrials.org, which has kept me in the loop about breast cancer clinical trials. I could go on and on.

It comes down to this: it takes a village to save your life when you have metastatic cancer or any other life-threatening disease. You cannot do it alone or just depend on the recommendations of one doctor. They can make mistakes and they are busy with other patients. No one is as invested in saving your life more than you. We get several estimates when doing a home repair. Isn’t your life more important than your house?

I’ve said it before and I’ll say it again: it is vital to be your own advocate! Network with others online and at conferences and support groups, do research, get second, third opinions — before it gets to the point that you are out of options and your life is in peril. At all times, have a Plan B and C in your back pocket so you aren’t sitting shell-shocked in your doctor’s office when you’re told your treatment is no longer working.

In my friend’s case, her doctor was going to give her a chemo drug that almost certainly wasn’t going to work,  just to appease her — one that would most likely put her very compromised liver into failure. I’ve seen too many friends fall into this trap. Remember, you are in the driver’s seat.

The unique fellowship of the cancer community is hard to describe to those who haven’t experienced it. But it’s one of the biggest blessings I’ve found in the six and a half years of living with stage IV breast cancer. Remember, you are not alone.

Some resources:

  • http://www.canceravenues.com/
  • www.inspire.com
  • http://www.advancedbreastcancercommunity.org/
  • http://mbcn.org/ (Metastatic Breast Cancer Alliance)
  • Thriving with advanced metastatic stage 4 breast cancer (closed Facebook group, must ask to join)
  • http://www.beatlivertumors.org/
  • http://www.annieappleseedproject.org/



Why I take care of myself

My cat AJ; now he's living the life of Riley!

Today I was talking to another cancer survivor who happens to work two jobs. He asked what I was doing today, and I mentioned I was doing a blog post and going for a swim. “Boy you’re living the life of Riley!” was his reply. According to Wikipedia this expression “suggests an ideal contented life, possibly living on someone else’s money, time or work. Rather than a negative freeloading or gold-digging aspect, it implies that someone is kept or advantaged.” Yeah, right.

I thought about the comment when I was swimming and I started to feel guilty. Then I remembered that swimming and other exercise is essential for my health. It’s not just for fun. I am doing everything in my power to stay alive and healthy. My last job caused me so much stress, I don’t doubt it was a contributor to the breast cancer coming back as stage 4.  Let’s face it, when you are faced with such a diagnosis, it really puts things into perspective. My life depends on it;  that’s why I eat (mostly) healthy, exercise, seek support, and say ‘no’ to many things that are negative and draining. I’m not going to pussyfoot around with my health any longer.

Yes, I’m lucky my husband earns a decent living. We live modestly but we do travel because we value having experiences together rather than material things. I take care of my family, and help and support other survivors while getting ready to launch my book, Miracle Survivors.  In my spare time, I’m searching the Internet or traveling for second opinions for the next best treatment to save my life. Yet with all this going on, I know my first job is to take care of myself and manage stress. I’ve learned that the hard way.

We all have stress in our lives, but does stress cause cancer? Everyday we are exposed to carcinogens, but a healthy immune system usually fights it off. Research shows that stress can depress the immune system and its ability to fight off disease. In an article on PsychCentral, Dr. Lorenzo Cohen, PhD, assistant professor of behavioral sciences at the University of Texas, M.D. Anderson Cancer Center , says stress might be one of many factors associated with cancer. While we can do our best to avoid stressful situations, we can never escape it completely. It’s how we manage it that makes a difference.  Often when people are under pressure, they stop exercising, eat poorly or even start smoking, all which can make the body more friendly to cancer. For others it’s a wake-up call to lead more healthy lifestyles and live their life’s purpose.

The tricky thing about stage 4 cancer is most people can’t tell you have it. There are so many of us walking around with full heads of hair and carrying on with our daily activities. But beneath the surface there is a lot brewing. Living the life of Riley? Hardly. But I’m very grateful to be alive and feeling well enough to take care of myself and also help others.

This post is in memory of Peter Devereaux, an amazing human being, advocate for male breast cancer and loving father and husband. Last week, Pete lost his life to the beast that is metastatic breast cancer . The world lost a shining example of courage, love and generosity. I share Pete’s story in my upcoming book, Miracle Survivors, due out Nov. 4. In the meantime, his wife Fiona contributed to this loving tribute to him in their local paper. Please keep his family and friends in your prayers.