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.

 



Company spreading awareness, advancing research for metastatic breast cancer

I love NY and the great cancer drug developments for MBC!

Last week I had a bit of an adventure. I joined four other bloggers in NYC to serve on Novartis Pharmaceuticals Advanced Breast Cancer Advisory Board. The company flew me in the night before, and I had a couple of hours to explore the city, then dine with a fellow board participant Kathleen O’Brien, who also serves on the board of the Metastatic Breast Cancer Network (MBCN).

The next day, we met with members of the PR/Marketing team and Dr. Steven Stein, SVP, US Clinical Development and Medical Affairs. They gave each of us plenty of time to share our stories and views about living with stage 4 breast cancer. And they asked us a lot of good questions. There’s a lot of bad press associated with “Big Pharma,” but it was evident they really wanted to gain understanding and help bring more awareness to MBC, both for patients and the public at large.

In the morning, Dr.Stein shared information about targeted therapies the company is developing. I just so happen to be on one of them – Afinitor, which inhibits a target called mTOR,  a signaling pathway that is highly active in many cancer cells including cells of the breast.

Another promising target is PI3-kinase, a protein that also plays a role in cell proliferation. Novartis has two PI3-kinase inhibitors on trial right now and a trial for another target — Cell division protein kinase 6 (CDK6)with the drug letrozole.

One of the frustrations about clinical trials is that often people with MBC or other stage 4 cancers are not eligible if they have been on previous treatments. Novartis has developed the Signature Program, which accepts patients based on genetic mutations, regardless of previous treatments. Patients must get tested for the presence of the relevant genetic changes in their tumor. Once the results of this molecular testing are received and verified, they will be advanced to Novartis’ board of experts who will rule on their eligibility to be treated with a relevant drug, based on the molecular ‘blueprint’ of the tumor.

The company also  has a website devoted to advanced cancer and is planning a campaign to raise awareness of MBC and Metastatic Breast Cancer Day on Oct. 13. And they have a list of resources for financial assistance, including their own program, on their advanced breast cancer website.

I left the meeting feeling very hopeful that we are finally getting to the point where targeted treatments will be available soon to help help people with  MBC and other stage 4 cancers  live longer and better. I am living proof of that. To find out about Novartis SIGNATURE trials, visit http://www.signaturetrial.com/. To learn more about MBC and join the advanced breast cancer community, CLICK HERE.

 



Cancer and depression: both are life-threatening diseases

Robin Williams' tragic death has shed a spotlight on mental health.

For a lot of reasons, Robin Williams’ death by suicide has deeply affected me.  Both my father and brother ended their lives as a result of the same disease Robin had: bipolar/manic depression. I have also suffered from depression (but thankfully not bi-polar disease) in the past. It was not to the point of wanting to end my life, but debilitating enough that living my life was a chore.

My husband Mike and I were talking last night about how awful it was around 18 years ago when my grandma died. She raised me as a young child, and I was devastated. I could not shut off my mind and didn’t sleep for weeks on end. My appetite was gone and I lost weight. I darkly joked that it was my “depression diet.”  Nothing brought me any pleasure, even our upcoming wedding. Mike told me how frustrated and powerless he felt. And it wasn’t the first time I fell into depression. I had a few other episodes in my twenties and early thirties; the worst time was when I did not sleep for over a month. My entire body felt numb and I felt like I was under water.

All I can say is thank God for antidepressants. At first I was very afraid to get on them. I didn’t want anything mind-altering, but as my therapist explained, if I broke my arm, I’d get a cast. This wasn’t any different; depression is a physical problem, a chemical imbalance in the brain. My brain was wired for it, and no matter what I did, I couldn’t just “snap out of it.”

What Robin Williams had was much worse. Bi-polar disease is very hard to treat. They never found the right combination of drugs for my brother Mitch. My dad had his under control for decades but sadly he died two weeks after I was first diagnosed with breast cancer. He never even knew I was diagnosed. All he wanted to do was die at the same time all I wanted to do was live.

So when I learned in 2008 that cancer had returned and this time it was  stage IV breast cancer, I worried that I would once again fall into depression. I knew I couldn’t do everything in my power to fight the cancer if I was depressed. And I almost fell into depression again even with the antidepressants. For several months, I felt like I was literally climbing out of a hole. It finally lifted once I started connecting with and reaching out to others with advanced cancer. It began with this blog, then interviewing people for my book, From Incurable to Incredible. It continued with the fabulous community I found on Facebook, through my local support group, Inspire.com, and at conferences I attended. I was not alone, and I found there was hope.

According to the National Cancer Institute, depression affects 15 to 25 percent of cancer patients. This seems low, but it is important to realize that sadness, which is common when you have cancer, is different than depression. Who wouldn’t feel depressed when facing a life-threatening disease? The difference is when you can’t eventually adapt to your circumstances and symptoms continue. There are different levels of depression; some worse than others. Some signs of major/clinical depression include:

  • Fatigue or loss of energy almost every day
  • Feelings of worthlessness or guilt almost every day
  • Impaired concentration, indecisiveness
  • Insomnia or hypersomnia (excessive sleeping) almost every day
  • Markedly diminished interest or pleasure in almost all activities nearly every day (called anhedonia, this symptom can be indicated by reports from significant others)
  • Restlessness or feeling slowed down
  • Recurring thoughts of death or suicide
  • Significant weight loss or gain (a change of more than 5% of body weight in a month)

If you or a family member are experiencing these symptoms, know that you’re not alone and you are not to blame for how you’re feeling. Also know there is help, and you don’t have to suffer. To learn more about finding a qualified mental health professional, click HERE.