Courage and strength: Living with stage IV breast cancer

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In September 2012, I photographed a group of women diagnosed with terminal stage IV breast cancer. Kay, Gretchen, CJ, Cece and Sally, as well as other members of METAvivor Research and Support, often held informal gatherings. A non-profit organization, METAvivor provides support to patients, raises awareness, and awards annual research grants for stage IV breast cancer. Many of its members form close friendships in the process of sharing their struggles and triumphs.

As I photographed these women, I was struck by their energy, joyful demeanor and dedication in helping others with the same diagnosis. I wondered how these ladies live with the possibility of death so close at hand while at the same time not only managing the painful and debilitating effects of the disease and its treatment. What gives them the courage to carry on with such grace? Has their philosophy of life changed? Their view of death? Here are their answers.


Click on a name to read more:
Kay Campbell
Gretchen Carlquist
Dian “CJ” Corneliussen-James
Cecilia “Cece” Curry
Sally Ring

KAY CAMPBELL
Kay Campbell was born in London but raised in Maryland. Her whole life “has been one of learning and teaching.” Campbell has taught in elementary classrooms and school libraries. She was also in library administration. A diagnosis of polymyositis in 1979 interrupted her career, split her family apart and changed her life dramatically with permanent mobility issues. Nevertheless, she “made it to full retirement” from Anne Arundel County in June 2010. She continues to love to learn, and says her garden is teaching her a lot. Campbell has been a long-time driver for Partners in Care in Anne Arundel County. When diagnosed with metastatic breast cancer in June 2011, she promptly joined and volunteered to work with the support program of METAvivior. In addition to having the “best friends a person could have — among them women from METAvivor,” she has two wonderful children, Jason and Tressa and their respective families.

Age: 64
Breast cancer diagnosis: August 1998
Stage IV diagnosis: June 2011

Question: In the face of living with stage IV breast cancer, how do you live with the possibility of death so close at hand while at the same time managing the painful and debilitating effects of the disease?

Let’s get this straight: Neither you nor I know when we are going to die. I just happen to have a diagnosis that comes with a death certificate — not yet filled in. Right now, I am very fortunate to currently not have overt painful and debilitating effects of metastatic breast cancer. Medications are another story. They are always double-edged swords. You must have them but they all have side effects. I try not to think of the day I am told that the current meds are no longer working. I hear this over and over and over again from other METAvivors. Their strength is… I find it hard to find a word that embodies what I see in them. It has something to do with the depth and breadth of their strength.

I have lived 34 years with a disabling muscle condition (polymyositis) which, in its first few years, changed my life completely… I have since retired from a successful career as a school librarian. Now, to be honest, the thought of managing advanced cancer brings tears to my eyes.

Question: What gives you the courage to carry on with such a zest for life?

The zest comes and goes. Anyway, the alternative is not nearly as much fun. I must laugh and I so enjoy making others laugh. Laughter is such good medicine… I do not think it is courage that gives the “zest for life,” but maybe it takes courage to “carry on” — to carry on when there is no one to laugh with, when the zest is not there on any given day.

Question: Has your philosophy of life changed since being diagnosed with Stage IV breast cancer?

Not really. Mostly it has been confirmed. I have tried to appreciate the person in front of me at any given time. I have tried to consider that moment important. I have tried to be aware of whatever surrounds me and look for interest, if not beauty. I am a learner and teacher. I still enjoy learning and, if you are in my path, you get to learn, also. With that said, stage IV has been a major distraction. I grieved that it got in my way. I have been angry that it has slowed me down. It has been hard reestablishing the “me I want to be” because stage IV is always lurking.

I still read. I still garden. I still love my music. I still love to be with family and friends. As it should, life around me keeps changing. This year, I buried my 97-year-old mother who died of dementia, and I welcomed a beautiful Downs Syndrome grandson into the family.

This may sound corny, but I feel like I have been getting ready to be part of METAvivor my whole life. Do I want to have stage IV cancer? Heck, no. But there are so many other women with stage IV and they should not be alone. Being a part of METAvivor allows me to help connect women with other stage IV patients. And we cannot continue to be ignored.

Stage IV has changed, not so much how I live my life, but my thoughts. It takes up too much thinking time. It distracts me from living. Then I have to work to get back to the basics of what its I can still do and love to do.

*Kay Campbell is director of support for METAvivor.

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GRETCHEN CARLQUIST
Gretchen was born in Lawton, Oklahoma on July 22, 1945, and raised in Illinois and New Jersey. She attended Purdue University with her two sisters, and graduated in 1967 with a Bachelor of Arts in Political Science. Carlquist moved to Washington, D.C. and married Charlie Hunter, a high school friend. She was a dedicated wife and homemaker and raised their three children, Krista, Chip and Victoria. She was also an active member of the The Junior League and Calvary United Methodist Church. After divorcing in 2000 following 28 years of marriage, she became an administrative assistant and later, a Financial Analyst for a contractor at NSA. She was a woman with grace, style and great fashion sense in clothes and home decor. On the website, CaringBridge.org, family and friends have described Gretchen as: a beautiful supermom, charming, treasured friend, generous, gentle, lovely and classy.

Sadly, Carlquist passed away November 9, 2012. In her honor, Krista Hunter, 39; Chip Hunter, 37; and Victoria “Torrey” Hunter, 33, have responded to the questions from their perspective as Carlquist’s children.

Age: 67
Breast cancer diagnosis: Fall 2002
Stage IV diagnosis: Spring 2011

Question: In the face of living with Stage IV breast cancer, how did your Mother live with the possibility of death so close at hand while at the same time managing the painful and debilitating effects of the disease?

Krista Hunter: My mom was a realist. She believed that everything happens for a reason and that you have to take one day at a time. I feel that she never believed that this disease would kill her so quickly, which is why she fought the disease and the debilitating effects of its treatment so strongly.

Victoria Hunter: She kept herself busy planning for the future and looking forward to things to come. She never felt sorry for herself and she never cried. She was incredibly stoic and strong. When it became clear that we had run out of options, I asked her if she was at peace. She said, ‘I am accepting’… She fought hard against cancer and stood up to it with grace and class for 10 years. That is something to be proud of. I will always admire my mom for her endless poise and courage.

Chip Hunter: I honestly don’t think she had a doom and gloom attitude about her disease and, while she had planned for her death (had a will, her finances in order, etc), she didn’t dwell on it or consider it imminent or “close at hand”… At times, she dealt with a great deal of physical pain, which was primarily associated with the chemotherapy treatments. She believed that if she could battle through the pain, the medicine would work and she would again find health… It was only at the very end (the last couple of weeks) that she, and I, realized and accepted that the end was near. This realization brought on emotional pain that was hard to bear. At this point, I think she was angry but accepting. Always a Mother, doing her best to bring comfort to her children, she did her best not to project these feelings, but I can tell you that I was angry that she and I were being robbed of the rest of her life. While in the hospital, she told me that she was accepting of the end, but was severely disappointed that she wouldn’t be able to continue to enjoy those things that she loved most. I hope to find this peace someday.

Question: What gave your Mother the courage to carry on with such a zest for life?

Krista Hunter: Her family, friends and home. She was extremely proud of all of us kids and she had a close-knit group of very supportive and understanding friends. Her home was beautifully decorated and she always loved any occasion to decorate it in some way for a holiday.

Chip Hunter: I wish I knew where she found her strength to wake up every morning and keep fighting. Thinking back to her life, I am in awe of her ability to persevere through all of life’s troubles. She rarely, if ever, complained about anything and was able to make the best of every situation. I do think she found strength through her faith, through the support of her friends and through the love of her children. She truly didn’t believe that her diagnosis was the end for her.

Question: Did your Mother’s philosophy of life change after being diagnosed with Stage IV?

Krista Hunter: I think she tried to live each day to it’s fullest. She was thankful for every day that she felt good and made the most out of the not so good days. She believed with all her heart that she could live a long time with this disease.

Chip Hunter: I don’t think her “philosophy of life” changed at all after being re-diagnosed. Mom’s philosophy was one of hard work and earning what you want. Whether it was a job, a relationship, a sport, or whatever, Mom always taught us that hard work pays off. She believed this philosophy would get her though this battle with cancer.

Question: From your perspective how did Stage IV change the way your Mother lived her life?

Krista Hunter: She didn’t let things stop her. And she stopped worrying about being judged by others. Whether it was the first day not wearing her wig in public or buying the red bird bath that she’d always wanted… she stopped second-guessing, and just went with it.

Victoria Hunter: It didn’t. My mom always said “take one day at a time.”

Chip Hunter: Her cancer didn’t really change the way she lived her life. She took it all in stride and made the best of every day. Having gone through chemo and beaten cancer 10 years before, she knew a lot of what to expect and was prepared for her battle. She stayed at her job and kept up her social schedule until she physically couldn’t do it anymore. I urged her many times to stop working and pursue something less stressful and time consuming, but she was very proud of her work success… Her success at work wasn’t a reflection of her paycheck, but was felt in the relationships she built, the respect she earned from her company, co-workers and clients and the fulfillment of learning a challenging job. Mom wouldn’t give that up until she had to. My Mother was a very inspiring lady. Her succumbing to Stage IV Metastatic Breast Cancer will not define who she was; she would not allow us to remember her that way. She would want to be remembered as a loving parent, a devoted friend, a hard worker, and most of all, as a Survivor.

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DIAN “CJ” CORNELIUSSEN-JAMES
Raised on the California coast, Dian”CJ” Corneliussen-James joined the Air Force in 1979 and spent the next 24 years living in locations around the world. Involved in everything from assessing Soviet satellite activity to leading the intelligence working group on the Joint Chiefs of Staff for the Somalia conflict, she retired as a Lieutenant Colonel in 2003. In 2006, she was working as a GS-15 senior intelligence officer in the Defense Prisoner of War/Missing Personnel Office when her breast cancer metastasized. Unable to maintain the hectic pace of her job, she stopped working for pay and began volunteering. In 2007, she established a metastatic breast cancer support group and a year later along with four other women, she founded METAvivor. Corneliussen-James was married to Rob James, an Air Force pilot and Vietnam War veteran in 1990 and since 1997 the two have been happily settled in Annapolis MD with their adopted cats – presently totaling four. The couple enjoys boating, gardening and traveling.

Age: 61

Breast cancer diagnosis: Nov 2004

Stage IV diagnosis: Sep 2006



Question: In the face of living with stage IV breast cancer, how do you live with the possibility of death so close at hand while at the same time managing the painful and debilitating effects of the disease?

The reality that my disease could take my life with little notice is certainly something that I’m aware of, but within a few weeks of my diagnosis I realized that dwelling on that fact was not the way I wished to spend what time I had remaining. I have been incredibly fortunate. I am not in pain and have no debilitating side effects. I tolerate my treatment well and have been stable for six years. Indeed, I am part of a very fortunate minority that has lived more than five years with metastatic breast cancer (MBC). I think for me it helps to know that even should my health fail now, I’ve had a truly excellent ride with this disease. So when I compare my MBC with that of others, I feel very fortunate indeed.


Question: What gives you the courage to carry on with such a zest for life?

I’ve had many different adventures and experiences in my life, but this disease has given me a mission with a purpose and focus unlike any other. It is allowing me to make a difference for those currently living with MBC and all those who come after us. I’ve always had a strong zest for life, but that zest is actually heightened, not diminished, by my disease. It has not only made it possible for me to truly make a difference for others, but it has brought me into contact with an extraordinary patient community as well as with amazingly generous people and organizations, who have taken on our cause and are doing so much to help us put it forward. They all serve as an incredible source of inspiration to me.


Question: Has your philosophy of life changed since being diagnosed with stage IV?

Before my diagnosis, life seemed so very open-ended. Anything I wanted to do … somehow I felt there would always be time to start any new direction in life that I wished to take. So I never took any decision too seriously. Now I realize how short life is for each individual… even if you live to 100. I am still fairly spontaneous, but my spontaneity is now tempered by the knowledge that certain decisions can have far reaching implications and those decisions should not be made lightly.


Question: How has Stage IV changed the way you live your life?

I rejoice in every single day and I take incredible delight in the senses of sight and smell. To breathe in the scent of flowers or cut grass or fresh fallen snow. To watch the sun rise in the morning or set in the evening… these are things I have always enjoyed, but now, each time I experience them, I am filled with an indescribable sense of joy at being alive and having this incredible opportunity to take this all in one more time.

*Corneliussen-James is the director and co-founder of METAvivor. 


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CECILIA “CECE” CURRY
Cecilia “Cece” Curry was born in New York and is a graduate of Frostburg State University with a Bachelor’s Degree in Fine Art. She has won several awards in art and design competitions. She has a passion for the arts and enjoys creative outlets such as painting and writing. Cecilia also has undergraduate credits in Theological Studies at Capital Bible Seminary. After her diagnosis in 2008 with stage IV breast cancer, she joined the METAvivor support group, which has been very helpful in finding the “new normal”, a path that all newly-diagnosed patients must take toward finding the balance between survival and quality of life.

Age: mid 40′s
Breast cancer diagnosis: 2000
Stage IV diagnosis: 2008

Question: In the face of living with stage IV breast cancer, how do you live with the possibility of death so close at hand while at the same time managing the painful and debilitating effects of the disease?

It’s my faith in God and in the knowledge that this life is just a transition into the next, that allows me to face the possibility of death. However, the fact that it’s coming too soon in life is upsetting (I’d hoped to grow old with my husband). But I use every opportunity to do something meaningful so my life can matter. The very debilitating effects of the disease and of the treatment side-effects often get in the way of that, but the only thing to do is push through it until you can’t push any more. I suppose I’ll know when the end is near. For now though, I keep going as much as I can.

What gives you the courage to carry on with such a zest for life?

Again, my faith in God and the strength He gives, allows me to carry on. For the most part, people are built in with a natural fear of dying, so when a terminal diagnosis comes, I think most people kick into survival mode and do anything they can to stay alive for as long as possible. Also, it’s very important to have a support system or support group. I often gain strength and courage from others. METAvivor has been very helpful, along with church, family and friends.

Has your philosophy of life changed since being diagnosed with Stage IV?

The main thing that’s changed is that I don’t put things off any more. I have a bucket list and hope to fulfill all of it before I’m gone. I have not been given the fortune of old age and years behind me; I was diagnosed at an early age and I probably will not have the opportunity to live a long life. So I guess that’s another way my philosophy of life has changed. Life now seems more fragile and more valuable and more precious — and very short.

How has Stage IV changed the way you live your life?

Life is harder. I’m sick a lot, tired a lot and in pain a lot. I’m behind on everything all the time. So I have to make the best use of any good days I have. Stage IV has also ended many prior dreams and goals I had, so I now have to come up with new goals, if time allows.

Additonal thoughts:

I’ve asked the “why” question so many times, but don’t know if I will ever get a satisfactory answer. For me, I’ve found that it’s best not to be angry at God because of this terminal illness. The anger has been a waste of time and energy for me, and the fact is, we will all leave this earth at some time. Rather, I try to spend whatever days I have left helping others when I can. My advice to others would be to love and take care of yourself, love your family and spend time with them, and try to live life to the fullest; to the best of your ability — whatever your body and energy will allow.

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SALLY RING
Sally Ring has been married to her husband Dan for 35 years. They have two children, Stacy and Jim, and two grandchildren. Ring is from a family of 12. Her mother had breast cancer. Sally says, “Thank God, no one else in my family has it.” She loves to entertain and to cook, especially gourmet food. Her other hobbies include reading, gardening and enjoying family and friends — especially her grandchildren.

Age: 55
Breast cancer diagnosis: January 7, 2010
Stage IV diagnosis: February 2, 2010

Question: In the face of living with stage IV breast cancer, how do you live with the possibility of death so close at hand while at the same time managing the painful and debilitating effects of the disease?

I am a religious person so that helps a lot. It’s been 3 years since my diagnosis with 58 lesions in my liver, and with a lot of prayers and medicines that worked, I am still here. We did the chemo right away and my body didn’t tolerate that well at all. The side effects were debilitating but by July all the lesions were gone. I had surgery to remove the original site in my breasts and lymph nodes the following year, May 2011. I had radiation in August and on September 15th, landed in the hospital for a month with a rare form of pneumonia called “BOOP” (Bronchiolitis obliterates organizing pneumonia). I was on a ventilator for 2 weeks and they didn’t think I was strong enough to survive because of the cancer and my age, but I did. God knew my family wasn’t prepared to let me go.

Question: What gives you the courage to carry on with such a zest for life?

I love to laugh and have a good time and this disease is not going to take that from me as long as I can still fight. I still go out a lot, entertain a little and enjoy my family and friends. You have to laugh or you will die a quicker and sad death. No one wants to die and if you think “why me?” then you will be sad. I have the attitude that you live the same as before as much as you can and that’s all anyone can ask of you, including yourself. There are no guarantees in this world and once again my motto is “Someone has it worse.” Seriously, there are young women who will never have kids, get married, see their grandchildren, and I have done all these things. There was a young woman in our METAvivor group, age 31 I believe, who just had a baby and she died 6 months after giving birth. How sad is that?

Question: Has your philosophy of life changed since being diagnosed with Stage IV breast cancer?

If anything has changed, it’s how many good people are in this world. I knew I had a great family and a lot of great friends but its been amazing and comforting at the same time on their reactions through all this. I have been bombarded by cards, letters and offers to help in any way I need. I have received some heartfelt letters from my nephews and nieces that tell me what I have meant to them that I would never have known if I didn’t have this disease.

Question: How has Stage IV changed the way you live your life?

I can’t do a lot of physical things I used to do. This bothers me the most. I can’t plan trips in advance because I don’t know how I am going to feel when the time comes. We were supposed to go to Italy for our 35th wedding anniversary but I can’t endure the long trip and I don’t want to go outside the USA with all the meds I have to take and being away from my doctors. I can’t stand the feeling of something dictating my life and I try to ignore it as much as possible, but in the end, I know my limitations. There are days that I think of my mortality and I get depressed but I don’t and won’t allow myself to think like that for very long. It doesn’t do anyone any good.

Additional Thoughts:

One thing I have to add is my support team. Without the love and help of my husband, daughter, son, son in law, our grand kids, my sister, my family and friends, my story might be different. They provide so much for me physically and emotionally, that I don’t know if I could have survived everything I have been through so far. I know I won’t beat this but I do know I will fight till the very end.

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Some answers have been edited, including for length and style.