Living with Stage IV Breast Cancer

Living with Stage IV Breast Cancer

Recently Lisa Bonchek Adams, an inspiring woman and whom I have featured here on The Silver Pen before interviewed a mutual friend, Jennifer Smith, author of the blog Living Legendary. One thing that these women have in common is that they are both young women living with metastatic, stage IV breast cancer. And Jen has just entered hospice. Yes, hospice. Because there are no more treatment options to stop the progression of her f-bomb breast cancer.

They both generously agreed to allow me to share their interview with you here. I believe from the bottom of my heart that it is important that we all have the opportunity to learn from and be inspired by them both.

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I don’t remember exactly when Jen Smith (@sinclair319) and I first connected on Twitter but we definitely hit it off: two straight-talkers with metastatic breast cancer, both determined to do what we could to live as long as we could while educating others about the day-to-day reality of living and parenting with a stage 4 diagnosis. Jen had already been doing it for years, and I have always appreciated the guidance she gave when I was diagnosed with metastatic breast cancer in 2012.

Jen and I are direct about our shared goals (she has a son, Corbin, who is 6. He’s about the cutest boy you will ever see. The photo above was taken a few months ago). Some of our goals: be honest about cancer with our children in an age-appropriate way, be public about the reality of parenting with incurable cancer, teach independence and joy to our children and let them know these are important to experience even after we are gone, and finally, to live life to the fullest even while undergoing difficult and often debilitating treatments for the rest of our lives.

Jen was diagnosed with at age 30. I encourage you to visit her website www.livinglegendary.org to learn more about her story and her writing (her two books are titled Learning to Live Legendary and What You Might Not Know: My Life as a Stage IV Cancer Patient).

The sad reality of metastatic breast cancer is that it kills. In fact, it’s the only kind of breast cancer that can kill.

Jen is now dying. She has entered hospice after being told in late July that no other treatment options were available.

I have few ways to help Jen in her remaining time alive but one way I thought about helping her was to share her story and her spirit with my readers. I asked Jen to answer some questions for me about two weeks ago and she graciously accepted. I know that today she would not be able to spend the time and energy doing this, so I really treasure the words that she has written.

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Lisa: First, I want to refer to a line in your book What You Might Not Know. You write that when your friend Erin was dying you panicked. You asked, “Would others feel this same panic when I was dying?”

I would like to tell you that right now, in this moment, the answer is yes. We feel the panic. I feel it acutely. And the helplessness.

Jen: The difference was Erin just had palliative surgery to alleviate her neck pain.  She was supposed to heal from that, then go on for more treatment.  But, during recovery at home, she became short of breath, begged her mom to call 911.  By the time they got her to the hospital, they were able to keep her sedated until her husband flew in.

I’ve watched many friends die, and the “shocking” ones like this one (and the one who just went to have a blood transfusion, then had a clot thrown in her lung and kill her) often offer a different kind of grief compared to those who go on hospice and you have “warning” that their life is coming to an end.  You can brace for the looming grief.

Lisa: As an introduction, can you please tell readers what your current health is today (August 17, 2013) and why you have entered hospice. Are you currently receiving any treatment? Do you receive palliative care? Most people think of hospice as something for the last week or two of life. If you would, please share what hospice will provide for you now and going forward as you move closer to death. Do you encourage people to get involved with them sooner rather than later?

Jen: After nearly 6 years of treatment for breast cancer, on July 31st, 2013, my doctor said, “I’m sorry, we’re out of options and it’s time to refer you to hospice.”

I’ve watched a lot of friends die from this vile disease.  I’ve always thought, “When hospice gets involved, I hope I go quick, in a matter of hours or days.”  Now, after being on hospice for over 2 weeks, I have a different perspective.  Hospice is all about comfort care…what can be done to make the patient more comfortable?  While on hospice you are not allowed to receive any treatment that would be considered actively trying to kill the cancer cells (i.e., chemo).  But, hospice often goes hand-in-hand with palliative care which is about relieving the pain and stress from a serious illness.

I have drains in my lungs which drain out the fluid which has built up due to the amount of cancer present.  This is palliative care.  It isn’t going to stop the cancer from progressing, but it is going to enable to breathe easier.  When my lungs are full of fluid (sometimes close to a liter per side) my oxygen intake is pretty minimal.  Because of this, my heart has to work harder to pump out that oxygen to my body.  With my heart working so hard, my whole body is tired.  Being able to drain my lungs takes care of the shortness of breath issue and also gives me a bit more energy since my heart isn’t working as hard.

Right now I meet with hospice weekly.  I got to decide the frequency.  I’m still fairly independent; I’m not confined to my house or bed.  As the disease progresses, I expect that I will meet with hospice more often.  Although they only visit once a week, I speak with them almost daily.  They are in charge of reordering any of my supplies (i.e. lung drain kits) and refills of medication.  It’s great being able to call, tell them what you need, then it magically shows up at my front door.  Hospice is like a good friend, not the enemy.  I’d highly encourage readers to consider their services as soon as necessary.

In full disclosure, my mom has taken FMLA time and is staying with us (I’m a single mom to a 6 1/2 year old boy).  While I’m still independent, I’m able to be that way because my mom is helping with all the behind the scenes stuff.  Laundry, groceries, cooking, cleaning, etc.  This way I’m able to conserve my energy and use it with my son.

Lisa: You have a beautiful son, Corbin, who is about to start 1st grade. I know when you were first diagnosed with cancer at age 30 and then with metastatic cancer only 3 months after completing your original chemotherapy you set a goal of living to see him enter kindergarten. What does the advent of school mean for you emotionally now that the first goal was achieved?

Jen: Correct, I made the goal of seeing him start kindergarten when he was almost 2.  I knew the statistics were against this, but it also gave me a very concrete goal.  Of course I had short-term goals along the way, but this was always the ultimate goal.

Last year when I took him to his first day of kindergarten, I was excited, thrilled, and so very thankful that I got to watch him walk in the front doors.  This year will be different emotionally.

In early August we learned who his teacher was.  We learned his best friend would be in his class in addition to many of his friends from kindergarten.  My son, like many his age, thrives on consistency and structure.  I am divorced and his father lives in a town about 20 minutes away.

When I was referred to hospice, I decided that I would start my son at the school in his father’s district.  I figured it was one less transition he would go through at the time of my death.  So next week, when I take him to his first day at his new school, it will be a mixture of emotion.  I’m so grateful that I’m able to see him start another year, yet heartbroken that him starting this school will be the first of many, many changes for him.

Lisa: How has your relationship with your physicians changed throughout the last six years with metastatic disease? And now that you have been told you are at the end of your life?

Jen: I’ve had the same primary oncologist who has always been in favor of 2nd opinions.  I joke that I’ve become a hospital hussy going for 2nd, 3rd, 4th and even 5th opinions.  But, my primary oncologist has always been my “go-to” person.  My oncologist has been in practice for 25+ years, so he is good at keeping the doctor/patient relationship boundary, but I’m willing to bet I’ll stick out in his mind, even after I’m gone.

Lisa: What are you are most proud of accomplishing?

Jen: Memories with my son, family, and close friends.  The walls of my home are covered with pictures from different vacations, photo shoots, and events.  I’m not interested in fine art, I’d rather have those pictures, and those memories adorning my walls instead.

Lisa: What do you want to be your legacy above all, besides Corbin, of course?

Jen: I feel like this is a trick question-ha! My legacy…wow, that’s a big one. I think the biggest thing is I would want people to stop being the victim in their own lives.  I’ve met so many people who have the attitude that they are the victim, everyone is out to get them.

I guess I would want my legacy to be for those people to take responsibility and control what they can. Don’t get me wrong, bad things happen to good people…and I’ll NEVER say “cancer is a gift.”  It is not.  It’s a thief and a murderer, not a gift.

But I’ve used having cancer as an opportunity to do some things in my life that I may never have done (leave my job, take a huge cut in pay, but go with the mindset of being on retirement and do things retired people do, i.e., travel!)

Lisa: I know you are a believer (as I am) in writing your own obituary so that certain words or phrases commonly used in describing the death of someone from cancer would be omitted. What did you feel it was most important to include and what language did you specifically want to avoid?

Jen: Language to avoid: “lost her battle” “was an inspiration and fought” “cancer was a gift”

Mostly though, I wrote my obituary and planned most of my funeral because I saw it as a gift I could give my family.  At the time of my passing, when they are numb and filled with grief, I didn’t want them to have to try and remember what awards I’d won, what year I graduated high school, or when I started at a certain job.  I saw this as a gift that I could provide them.

Lisa: What song do you feel best describes your life or your outlook?

Jen: I’m stuck on this one…not sure that one describes my life or outlook.  There are ones that I want played at my funeral for specific reasons/to bring comfort during that time.

Lisa: You and I have many similar approaches to dealing with our cancers. We were diagnosed originally at a similar time and when we each had a child under one year old (I also had a 3 year old and 7 year old at the time). One thing we differ greatly in, however, is religion. You write in your book that you think God has a plan for you and that you believe in Heaven and seeing others after you die. You write that you “could not have gotten through this” without your faith. As an atheist who believes this life is all there is and never prays for nor believes in miracles, I am wondering if/how your religious beliefs have changed as you have come closer to death.

Jen: I’ve witnessed a miracle and I see him every day.  I’ve been more forthcoming in sharing the excruciating infertility experience I went through to get pregnant. There is no way the last cycle should have worked. There were too many variables that were not in our favor. But, a miracle happened, and Corbin is living proof of it.

I was raised Methodist and still attend the same church I attended as a child.  While I go to church regularly, I don’t consider myself “religious” because I can’t quote Bible verses/stories.  I consider myself as having a “strong faith.”  I’ve witnessed too many completely amazing things to believe they were mere coincidences.  I’ve met people (on mission trips) who are so financially poor that they live in trailer and use an outhouse, yet they are so rich in life.

I see Heaven as a huge “welcome home” party.  I remember reading a quote that says: One day God says, “Enough, come home.” And that felt so comforting.  I know that I’ll be reunited with family members, friends who were stolen from this disease, and most importantly, the child I carried but never met on Earth.  And, I think that in terms of eternity my family/friends/son will join me in the blink of an eye.  My faith, which Corbin has learned has brought great relief during this time.  He knows that he will see me again and that I’ll be waiting for him at his “welcome home party.”

Lisa: Are there any decisions about your treatment in the past six years that you regret? That you think were not fully explained? I, for example, had an oophorectomy (as you did, too) but feel the side effects and long term health risks of having that surgery (increased risk of lung cancer, for example) were not fully explained. And, on the flip side are there any treatments you feel were particularly important in extending your life?

Jen: I can’t think of any.

Lisa: What are a few things you think are the most important myths we should debunk right here, right now, about metastatic disease?

Jen: I know society and the media have conditioned us to use the language “battle” against cancer, or in the “fight/war” against cancer.  This is something that I’ve never really felt connected to. After all, what am I battling?  A rogue cell in my own body, so in essence, I’m fighting myself.  The best quote I’ve found that relates to how I feel is when Elizabeth Edwards died in 2010.  Her friend said, “Elizabeth did not want people to say she lost her battle with cancer. The battle was about living a good life and that she won.”

The other frustrating thing I run in to is “So-and-so tried XYZ therapy and was stable for 10 years, why haven’t you done that one?”  Then I explain that I tried XYZ and had progression in 3 months.  I think getting people to truly understand that this is such an individualized disease is key.  Just because XYZ works for one person doesn’t mean all people will respond the same way.

And, this is just me, personally, but I hate being referred to as “sick.”  I’m not sick; I have a disease called metastatic breast cancer.  If I was “sick” that would imply that I’m possibly contagious or that I’ll get better, neither of which are true.

Lisa: Your son has never known a time in his life when you didn’t have cancer. He is very astute and caring and sensitive. He is a joyful boy is not afraid of many of the topics and subjects that many parents try to “shield” their children from.

I know you and I both believe that protecting children by withholding information is not the right thing to do. Age-appropriate information dispensed in small pieces is better. Do you notice that other parents are uncomfortable around you and Corbin for this reason?

Jen: Maybe I’m completely naïve, but I haven’t noticed that other parents are uncomfortable around Corbin and me.  More often than not, I’m told, “Thank you for being so open.  My aunt/grandma/relative had cancer but we really didn’t know about it until she passed.”

I’ve worked to connect with as many as possible and be as transparent with information as possible.  People assume that a bilateral mastectomy means a “great boob job” at the end.  I’ve posted pictures of my bilateral mastectomy (without reconstruction) to educate others.  I’ve also posted a picture of my scan, so when I say “it’s everywhere” they can see the scan that shows it truly is everywhere.  This was an especially powerful message because I look so “healthy” on the outside.

Lisa: I’d like to leave readers with your video which is one of the most beautiful tributes to a loving relationship I’ve seen. I implore readers to spend two minutes of your life seeing Jen and Corbin. They will make you cry and make you smile. If there is anyone who knows how to live legendary, it’s Jen.