#Stage4Lifer Wanda Lewis: Educating About Metastasis And Living Life to The Fullest

Our #Stage4Lifer Campaign blog series continues! Hear My Voice Outreach Volunteer Wanda Lewis wants to educate you about what “metastatic” means and how it’s impacted her life. She also wants you to know that she’s living life to the fullest.

You watched Wanda tell her story. Share yours. Join #Stage4Lifer on Twitter and Instagram.

#Stage4Lifer: How I Live With Stage 4 Breast Cancer

There are many emotional and physical side effects of metastatic breast cancer and its treatmentsRead Judy Erdahl’s #Stage4Lifer post below about how she lives each day with this diagnosis. (And follow Judy today, Wednesday, September 29, as she takes over our Instagram account, @livingbeyondbc!)

I have an odd life.  I live with metastatic breast cancer (MBC). A disease, which the American Cancer Society states, has a five-year survival rate. I’ve never followed the norm however, and I’ve been living with MBC for 5 ½ years.

I was originally diagnosed with stage Ia invasive lobular breast cancer when I was 43. I went in for my 5-year check up, sure that I had followed all the rules and would now be free from breast cancer forever.  I’d already survived another cancer scare in my early 30s. I could certainly do this. Apparently, I must be good at “doing cancer” because cancer was not done with me. Breast cancer cells had circulated through my blood stream and taken up residence in my bones. I now had metastatic breast cancer.

People ask me all the time how I live with this disease. There is constant fear, uncertainty and grief, and those are just the emotional side effects. The physical toll is indescribable.

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This technological world we live in is amazing in the connections and support it allows us to find. But, when you connect with others who have MBC they die. A lot. And it’s overwhelmingly sad.  Yet, we keep connecting with each other. We’re brave that way. We open our hearts and share the fear, the pain, the almost unspeakable worries and questions that come with holding hands with our mortality:

  •  How do we tell the ones who love us yet more bad news when a treatment fails or a scan shows progression?
  • What do we tell our children?  How much can and should they know? How do we leave a legacy that matters?
  • How can we handle the friends and family who leave because loving and caring for someone with MBC is a long, tough, and emotionally devastating haul?
  • How do we live with the emotional maelstrom that MBC brings?

I can only answer how I live with it. There is no right way. You just have to find what works for you and on some days nothing will.

I look at living with MBC as being similar to practicing yoga.  Tree pose is something most people are familiar with.  It’s all about balance and non-judgement. You can’t compare how you’re doing it with how someone else is. You find what works for you. And when you do stumble, and you will; let go of judging yourself. Breathe and try again.

It’s also about staying present. The days I live in the past I find myself depressed.  I should have done this or that. What if I had had less stress in my life?  Would cancer still have come?  Then there are the days of anxiety and panic about the future.  How bad will this get?  How debilitating will this disease ultimately become? Will I still be able to live with some dignity or will MBC strip it all from me?  What if I can’t handle the pain?  So much fear and anxiety.  I’ve learned the safest place to live is right in the present. At this moment, and with this breath, I’m ok.  I’m handing the pain, I’m living, and I’m ok.

The other thing I try is gratitude.  I am not saying that I’m thankful for cancer. Cancer sucks. I’m not saying that a positive attitude is going to make everything better.  Happy, positive people die just the same as people who aren’t positive. I am saying that there is much in my life I’ve lost control over, but the one thing I do still control is my attitude. I make a choice to find things to be grateful for.  It helps me cope.

Some days I am struggling to find anything to be thankful for because basically, it all stinks.  I look in the mirror and wonder where on earth I’ve gone and who is the person looking back?  My hair has come and gone a few times, my breasts are different, my skin is different, I gain weight, I loose weight, and on and on.

I have no consistency with my body or even my day to day life most of the time.  Cancer ends up controlling more then I’d like, no matter how hard I try to keep in control. So, the one thing I can choose is my attitude and I’ve chosen to be grateful.

This isn’t to say that some days I don’t find myself wallowing in self-pity, or anger or frustration.  I’m human.  I feel it all and it’s all valid. But I’ve learned that when I’m at my lowest and darkest if I can find one tiny thing to be grateful for,  it becomes the thread of hope that pulls me back to finding balance.

You’ve read Judy’s story. Share yours with #Stage4Lifer on Twitter and Instagram.

See Judy’s Instagram Takeover.


 Judy Erdahl has been living with cancer for over 20 years. Judy spent much of her adult life serving families as a licensed parent educator. When Judy’s third round with cancer forced her to retire she turned her energies towards writing and educating others about the real world of stage IV breast cancer.  She has shared her story with audiences large and small and is a passionate advocate of metastatic breast cancer research and education. Judy is a co-founder of “Team Judy” which raises money to support metastatic breast cancer research at the Masonic Cancer Center, University of Minnesota. She is a Hear My Voice Advocate for Living Beyond Breast Cancer and a breast cancer research reviewer for the Department of Defense Medical Research Program. (CDMRP) Judy shares her story of living with metastatic disease to encourage others to learn to live each day with gratitude, compassion and hope.  You can find her at PinkisComplicated.com

#Stage4Lifer, In Treatment for Life: What “Pretty Normal” Looks Like

 

Hear My Voice Advocate and Camp Chemo Author Camille Scheel shares what “pretty normal” looks like as a #Stage4Lifer in the EMBRACA clinical trial.

SEPTEMBER 6, 2016: Waiting for test results is never easy, yet it’s a fact of life with metastatic breast cancer. Today,  I’m going to the clinic for blood work. Specifically, to make sure my platelet, white and red counts are at acceptable levels. The requirements are extra stringent because I’m on the EMBRACA clinical trial.  Over the five months I’ve been on this trial, there have been times where my numbers have not cooperated. Now if they aren’t in line even just one more time, I’ll be disqualified from the study.  As I write, I’m not sure what my numbers will reveal later today.

The thought of ending this clinical trial makes me so nervous. Knowing I was randomized to receive the study drug, I’ve been so happy to be on this trial. This medication is keeping my cancer stable. The best part is, it’s doing so with almost no side effects. My energy, strength and digestive system are the best they’ve been since before I was diagnosed with metastatic breast cancer.  But like most things with this disease, I’m not in control. There’s no way to cheat on a blood test. Yet, if I could, honestly, I would. Having a life that feels pretty normal is something I won’t easily give up.

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What does “pretty normal” mean for me? It means I’m able to eat most anything I want without mouth sores or abnormal weight gain. These days I rarely need an afternoon nap to maintain my energy levels.  I’m even able to move my body for my household chores without getting sore. Not everyone who enrolls in a clinical trial has such an improved quality of life, but for me it’s been a nice surprise.

Early on in my metastatic journey I thought clinical trials were only for people with no other FDA approved medications left. While it’s true some early phase trials do seek patients who have run out of treatments, many more trials are geared to people who are still healthy enough to have other options. We always need other options because metastatic breast cancer eventually outwits even the best of medications.

Treatment for life means always looking ahead to the next treatment. Sometimes this means asking my oncologist about existing FDA approved drugs, and sometimes it means researching existing clinical trials. BreastCancerTrials.org is one way to do this, but talking with other patients and your oncologist is key to finding one that’s right for you. Okay, deep breath – going in for my blood work now!

AFTERNOON: Just returned from the oncology clinic. My numbers are good! I can stay on the study! Next week will be another set of blood work, so soon, I’ll be right back to where I was earlier today worrying about my test results. But for the next seven days, I’ll do my best to relax.

The study I’m on, EMBRACA, is still seeking participants. It’s a bit of a needle in a haystack situation. Patients must have the BRCA genetic mutation, an area of metastasis large enough to follow, and free of many other major medical issues.  If you or someone you know wants to learn more about this study, visit https://www.embracastudy.com for more information. Many other studies are seeking patients. It would be tragic to lose medical research for lack of participants.

Being part of medical research has improved my quality of life. Together, we can make a difference that will help not only ourselves, but future generations.

Watch Camille talk about clinicial trials and treatment for MBC:

You’ve heard Camille’s voice. Raise yours. Join #Stage4Lifer on social media.


Camille Scheel is author of Camp Chemo: Postcards Home from Metastatic Breast Cancer, published in October 2015. The book is based on her Caringbridge blog. In February, 2016 she partici-pated in reviews of breast cancer research in Washington, DC for the Department of Defense Congressional Funded Medical Research Program. Camille was diagnosed with ER+ BRCA2+ Stage III Breast Cancer in 2007 and bone metastasis in 2012. She lives with her husband Wade (a potter and painter), daughter Vivian (15, a musical theater actress), son Jackson (9, a gamer), Siamese cat, ShuShu and a darling little 5.5 pound Chihuahua, Lupita.

Stage4Lifer: Artifacts of Generational Caregiving and Metastatic Cancer

For #Stage4Lifer, Hear My Voice Volunteer Felicia Johnson blogs about her family history with cancer, and going from caregiver to the one needing care after a metastatic diagnosis.

 

feliciaThe initial shock of being diagnosed with metastatic breast cancer closed down my mind. I heard the words my surgeon said, “You have metastatic breast cancer”. It was as if I placed my hand on a hot pot without wearing an oven mitt. I left my doctor’s office trying to assimilate the information she had given me. I digress just for one moment to paint a picture.  I understood the word “cancer”.

You see, I have lived within the boundaries of three generations of cancer.  I did not experience childhood like most girls. There was no excitement about playing with dolls. There were no pajama parties.  I did not dream of my first date and kiss. Why? At the age of 14, I experienced my first role as a caregiver.  My sister was diagnosed with brain cancer at nine years old in 1974. I was responsible for visiting her along with my parents to play and comfort her as best I knew how. Unfortunately, she succumbed to the disease.

At that point, my cancer-related skill box was open for training. The cancer continued to grow and affect the women in my family like an uncontrollable weed. There have been a total of eleven women diagnosed with breast cancer in my family. It was vicious, mean and came in the form of metastatic breast cancer. At the age of 15, I was sitting in the hospital waiting for my mother to come out of breast surgery. Before I knew it, I was attending cancer-related doctor’s appointments for my aunts, sisters and cousins who had been diagnosed with breast cancer. As the years passed by, I learned how to listen, take notes and ask important questions.

What I did not realize was the depth of what it meant to be a caregiver. It was not like today. There are services that support families taking care of terminally ill loved ones. I had on the job training. It started with a diagnosis. Next, I moved to family and psychosocial concerns, surgeries, palliative care, and hospice. Was all that training to be wasted? No, you see, I was diagnosed with metastatic breast cancer in 2003.

As a mentioned earlier, I understood the word “cancer”. It was the descriptive adjective “Metastatic” attached to cancer that tossed me into moving traffic. That word silenced my mind like the darkness of a midnight moon. I did not know what to say to my doctor. I was pushed suddenly and uncontrollably on to a cancer conveyer belt. It took control of my life. However, there was also new a challenge; I was the patient. My family and friends were now taking care of me.

My body started to melt down with every imaginable side effect. I was the one whose biological machine revolted against the toxicity of chemo. I was the one going through the harshness of side effects. I was the one who could not walk more than three steps without needing to rest. . I was the one faced with the meaning of cancer and excruciating  pain. My list could go on for ten pages, but I will stop here. Yes, I was dragged inside the cocoon of metastatic breast cancer.  But I had a secret weapon. The outer shell of my silk cocoon was woven with my family and faith. My family had the care giving experience and faith to help bring me through. In closing, I continue to utilize all the caregiving skills I gained from my generational teachers. And when I think about the word N.E.D.  I say the following:

N: Navigating my way through each day because it is a blessing.

E: Even though I don’t have a diamond ring, my life is priceless. I am going to share it with my family, friends and others.

D: Don’t know about tomorrow. But, I can sing about today. I have danced in the cancer caregiving ring for more than thirty years. No matter what the outcome, faith is my main dance partner. And that’s my artifact of generational care giving.

 

You’ve heard Felicia’s voice. Raise yours. Join #Stage4Lifer on Instagram and Twitter.


Felicia Johnson has been living with metastatic breast cancer since 2003. The complexity of cancer has taught her to take a holistic approach to fighting it through education, medical science, faith and nutrition. Breast cancer has led her to become proactive in sharing about breast health. She serves as a breast cancer leader at a faith-based organization. She is also a cancer buddy at a major healthcare facility in Philadelphia. She enjoys learning about breast cancer research and new treatments options. In her free time, she likes writing and spending time with her family. She believes, “My purpose is to help others with their breast cancer battle.”

#Stage4Lifer: A Plane No One Wants to Board

Hear My Voice Volunteer Kristi Stone, on being her own healthcare advocate, educating others and enjoying life to the fullest. Join the #Stage4Lifer campaign with Kristi!

 

I am one of the faces of metastatic breast cancer. I’m Kristi Stone,  a 46-year-old wife and mother of two daughters. Describing what MBC is like is akin to waiting in line to board a plane that no one wants to board. I was diagnosed at age 44, on Christmas Day, 2014, with de novo (or initial diagnosis with) metastatic, or stage 4, breast cancer that spread to my bones, neck to knees, and innumerable lesions in my liver.  Being told treatment would not likely work and that I had about 30 days to live, was the biggest shock of my life. I received the news in such a cold, heartless manner at an emergency room, by a doctor who simply gave the news and then just walked away.

I researched and found an oncologist, sure that the doctor at the ER had to be wrong. I wish that had been the news I got,  but my initial  diagnosis was correct. My new oncologist told me the same thing. I ran out of that office, fell into some sticker bushes crying as hard as I ever have. I went home and tried to gather my thoughts. I went to see my oncologist and asked if we could at least try treatment. We decided to try. I’m very thankful that I did!

I was barely able to walk. I was using a wheelchair most of the time, because I had become so weak. I’ve felt better with every month I’ve been on the prescribed oral chemo. The treatment has been very effective for me. I have three brain mets,  but they are very small and stay controlled.

I enjoy life as much as possible, finding joy in the simplest things. I try to help others through my advocacy work, reminding folks that a metastatic breast cancer diagnosis can happen to anyone, at any age, even if you live a healthy lifestyle. And that research is our best weapon against it.

My goal is to live with MBC the best I can, continuing a quality life as long as possible. My priorities are spending time with family and friends and pushing for more research for this deadly breast cancer, so that this disease stops claiming thousands of lives a year. I want out of this line, and I don’t want to board that MBC plane. I don’t want to see anyone else have to get on either.

In the meantime,  I will enjoy each day I’m fortunate enough to have, and have the time of my life at every opportunity! Living, laughing and loving.

 

You heard Kristi’s voice. Raise yours. Join #Stage4Lifer on Twitter and Instagram.

Stage4Lifer: Menopause and MBC at Age 40 – The Journey I Didn’t Choose

Young people can be diagnosed with metastatic breast cancer. For Stage4Lifer, Dionna Koval writes about learning she had metastasis to her bones at age 42.

 

I had my first mammogram on my 40th birthday and continued to do them each year after that. In April 2014, months after my annual mammogram, I just finished moving into a new home and started having pain under my right breast. I thought I pulled a muscle from moving and ignored the pain. By the next day the pain was so unbearable that I couldn’t breathe.

My mother finally convinced me to go to the emergency room. Once there they did a series of tests, including a CT scan. By mistake the tech did the scan higher up on my breast; thank God she did because that’s how my lump was found – along with 3 broken ribs. My last mammogram was done in September of the prior year so I wasn’t that worried but in the back of my head I kept thinking what if. I was sent to do another mammogram and ultrasound. It was then that the radiologist told me he was positive it was cancer without even doing a biopsy. I had the biopsy done, and the wait for the results drove me nuts. Sure enough on April 25 I was told I had breast cancer.

Hearing the words, “You have cancer,” at 42 was like a punch in the gut, especially since I had my mammograms regularly. My life came to a halt. I have a son and am divorced. I wondered how I was I going to get through all this. Little did I know, I hadn’t even heard the worst news.

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By that Monday I was contemplating whether I was getting a single or double mastectomy. Before I could make a decision, my surgeon called to tell me that we weren’t doing the surgery anymore; my doctors learned that the cancer had progressed to my bones – I was officially diagnosed with stage IV breast cancer. Once again I was devastated. Many thoughts ran through my head. I thought my diagnosis meant I was going to die soon.

I met with my oncologist the following Monday and couldn’t even hear what she was saying. It was tough for me to wrap my head around all of the terms being used and the news overall. The type of cancer I have is ER/PR-positive. My healthcare team and I decided upon a treatment plan and I started that day. It consists of three injections of Faslodex and Lupron. Here I am, in my early 40s, and put straight into menopause. I was told my cancer would respond best to this treatment, and I’ve been on it for the last 2 years.

At the beginning of my journey, I realized that I didn’t even know a lot about this cancer and neither did my family and friends. Why is it that something this serious was never talked about? How could I have lived without knowing more about MBC? Now that I have this diagnosis, how long do I have left? This cancer will eventually kill me but I’m not ready for that. I need answers, I need a cure! I’m living my life as I always have done but with more of a mission, if that makes sense. Since I don’t have the answers I need or want I will not let anything stop me from enjoying time with my son, family, and friends.

Looking back to the beginning of my nightmare, I can’t imagine doing any of this alone. I learned a lot about myself and people that I thought were friends. My biggest support system has been my parents. I live with them now because there are times I need help. I feel secure and safe knowing I have them in my corner.

My biggest fear is dying soon and not seeing my son graduate from high school, start college, get married, have children. I’m sure I’m not the only one who feels this way. I’m there for every milestone my son has. I don’t care how sick I am or how much I’m hurting – I will never miss time with him.

This journey was not one I would ever have chosen but this journey has made me stronger than ever. This journey allowed me to meet other strong women like myself. This journey will help me educate women who don’t know what MBC is. This journey motivates me to raise my voice for for those that need to understand our need for a cure. I might not be able to change the world as quickly as I’d like, but I will make a change. I plan on saving my own life, to be there for and with my son. This journey has not taken the fight out of me. I will live my life with determination, purpose and most of all love. Negativity doesn’t belong in my life and “no, I can’t” isn’t something I say. This journey may have chosen me but I will make this journey the best one yet!

You heard Dionna’s voice. Raise yours. Join #Stage4Lifer on social media.


Dionna Koval is 44 years old and was diagnosed with breast cancer on April 25, 2014. She later learned she had stage IV disease that spread to her bones. She’s lived with the disease for more than two years. She completed LBBC’s Hear My Voice: Metastatic Breast Cancer Outreach Volunteer Program training this past April. When she’s not educating others about MBC, she enjoys spending time with her 14-year-old son, family and friends.

#Stage4Lifer: Men Get Metastatic Breast Cancer, Too

Men have breasts, too, and they can get metastatic breast cancer. Roger Grates shared his story with our friends at the Male Breast Cancer Coalition in August. He wrote this follow-up for the #Stage4Lifer campaign.

Roger-Grates41_750W.jpgI have battled male breast cancer three times over the last 18 years.  When I finished my last radiation treatment six months ago, I was told by my oncologist the cancer had metastasized to my lung.  Facing a more imminent mortality was my first challenge. The new normal of living with oxygen, exhaustion and depression is difficult.

My second challenge was to work with my oncologist on a treatment plan.  Shortly after I started Lupron, the initial treatment, I developed atrial fibrillation. Since Lupron cannot be taken with any anti-arrhythmic drug, we were back to square one.  My doctor prescribed Faslodex and Ibrance, a new regimen that has proven to slow the progress of metastatic breast cancer.  Fortunately, the University of Michigan has an oncology/cardiology program to work with patients like me and I have been successfully treated for the atrial fibrillation.

Accessing the drug Ibrance presented the third challenge.  The drug costs $10,000.00 per month.  Since the FDA said Ibrance is for postmenopausal women, my insurance company denied payment.  The University of Michigan stepped forward and helped me get financial support from Pfizer and eventually from my insurance company.

Accessing all available resources is so important.  My wife has been a diligent caregiver as well as constantly researching the Internet for other resources.  When she discovered and contacted the Male Breast Cancer Coalition, they stepped forward immediately to offer support.  Thankfully, our family and friends have surrounded us with emotional support, which helps us get through each day.

 

You’ve heard Roger’s voice. Raise yours with #Stage4Lifer.

 

If you’re a man diagnosed with breast cancer, check out these resources:

Male Breast Cancer Coalition website.

Breast Cancer inFocus: Breast Cancer in Men