What to do when you get diagnosed with Stage IV breast cancer: some starting thoughts…especially about children

October 5th, 2012 § 24 comments

I loved the book The Age of Miracles by Karen Thompson Walker. I had the pleasure of meeting the author a few months ago. In the book, the earth’s rotation starts to slow. The days stretch longer with obvious consequences on daily life with some not-so-obvious effects on personal lives. I found the book immensely readable, creative, and thought-provoking (My teen daughter thoroughly enjoyed it too. It’s absolutely appropriate for that age group).

My own life has suddenly taken an opposite turn. It feels as if the world has sped up. The days are flying by. There just isn’t enough time.

It’s only been four days since we had an inkling from my oncologist that I had metastatic breast cancer, three days since I have known for sure. And now, in the middle of the night, it’s time I long for. The Earth is spinning so fast… how can it be I’ve been awake for two hours? Have I spent them wisely? What else could I be doing with those days, minutes, seconds?

I’ve done so much already.

I wanted to share a few ideas on things I’ve done already, many of them pertaining to my children. In the dizzying days after a metastatic cancer diagnosis there is so much emotion that it might be hard to think about what to do. You feel helpless. In some ways you are helpless until you get more information. But in the meantime here are some tips about what you can do.

I understand that not all of my readers have children. But for those of us who do, helping children adjust to this news is vital. It not only helps the children but can help relieve some associated stress for the parent.

  • Don’t share your news until you know for sure what your particular diagnosis is. I don’t think you need to know your exact treatment; that takes time. But even knowing a general range of what might be used is helpful. If you have had cancer before, children will usually want to know if you will be doing the same thing (especially if it has to do with hair loss) or if it will be different.
  • In my case I needed to have a mediastinoscopy with biopsy after my status was confirmed. It’s an outpatient surgery that inserts a camera through an incision in your neck to grab some lymph nodes for biopsy. I decided to focus on that concrete event mostly… it’s something children can wrap their heads around… Mom is going to the hospital (not uncommon in my household), having a small operation, will be back tomorrow night. I explained the cancer, the metastasis, and answered lots of questions, but I think the “one step at a time” was more easily tangible with the surgery as the immediate hurdle. If you will need an overnight stay for your particular surgery I think it’s best not to spring that news on children if possible. An overnight absence is best with a few days’ notice. Children, in my experience, are usually a bit clingy after bad news and that would provide the opportunity for follow-up questions and reassurance.
  • Be sure you understand your diagnosis. Explain what words mean to children and to your friends. There are many misunderstandings about cancer and stage IV cancer. The word “terminal” might be scary. Stage IV cancer is not the same diagnosis in different diseases. Prognoses vary and some types of metastatic cancer can be slow-growing or respond well to treatment, allowing years of life.
  • I think the phrase “it’s not curable but it is treatable” is important to teach and use.
  • Wait to share your news publicly until after you have told your children (except with a few close friends you can trust to keep the information to themselves. This determination may not be as easy as it sounds). This also gives you a day or two to begin adjusting to the news so that when you do discuss it with your children you might have emotions a little more in check.
  • As soon as you tell your children, be sure to tell adults who work with your children on a regular basis. If your children have learned the news, by the time they go to school, lessons, and sports, their teachers need to know. Email coaches, teachers, school administration, guidance counselors, school psychologists, and music teachers. Grief in children is complicated and it’s important that all of the adults know and can be on the lookout for odd behavior. Also, they need to be understanding if things don’t seem to be running as smoothly at home or a child seems tired or preoccupied. Two-way communication is key. Adults need to know they have the opportunity to bring any problems they see to your attention easily. Encourage them to do so, whether what they observe is positive or negative.
  • Use counselors, especially school psychologists. My first call yesterday morning before I left for surgery was to reach the high school psychologist. Because she is in a new school (high school) I didn’t even know which person it would be. Even though it was only 9 in the morning when I called, she had already received my email (forwarded from the guidance department to the appropriate person) and had a plan in place to find my daughter during 2nd period study hall. She was able to introduce herself, talk to my daughter, and let her know how to get in touch with her as needed. They set up an appointment to meet to talk more in depth after their initial chat. Paige likes her, feels comfortable with her. This resource is invaluable. After my mother-in-law was killed in a car crash 3 years ago, the middle school guidance counselor became a refuge for Paige. When she was sad, distracted, needed a place to go have a good cry or talk, she had a safe place with an adult to help her. These individuals are part of my team. We are working together and it’s so important to use them.
  •  I have always felt that it’s important to be honest about a diagnosis; that is, open and public. I know this doesn’t work for everyone. The downsides of being public about a diagnosis are outweighed by the negative pressure for children if they have to keep a secret and bury feelings about such a serious topic. Children take their lead from you. If you are up front and comfortable discussing it, your children will learn to be that way, too.
  • Call your other medical professionals and tell them of your diagnosis. Not only will they want to know because they care, but there may be instances where treatments may need to be examined or medications evaluated more often (for example, my endocrinologist wants to monitor my thyroid hormone levels more often than usual). They are all part of your team. They want to know. Many of the most touching and heartfelt phone calls I got were from my doctors this week. They cried with me, gave me information, offers of help, and caring. It also means if you have a situation when you need urgent medical care their office will already be aware of the situation and will likely respond more quickly to get you in to see the doctor.
  • A carefully worded email is invaluable. Accurate information is documented so people don’t spread rumors. Friends can refer back to it if needed without asking you. They can forward it to other individuals easily, as can you. Choose your words carefully. The words you use will be repeated so make sure the email says what you want it to say to friends and relatives. The right explanation is much more helpful than a quick one sentence Facebook status update. People will have questions, and you can head many of them off by including that in your email (if you so desire).
I will be posting more tips about what I’m doing in the weeks and months ahead. Hopefully they will help you or someone you care about. There is so much you can’t control during this time, and that’s unnerving. Even taking steps like these can give you concrete tasks and a feeling of accomplishment that you are helping yourself and those you love.

 

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§ 24 Responses to What to do when you get diagnosed with Stage IV breast cancer: some starting thoughts…especially about children"

  • You are the clearest person in a crisis I’ve ever met. I have been through medical crises & others with kids in the mix (including ours) & have to echo your firm belief in honesty. And in reaching out for support.

  • You are honoring your children in how honest you are with them. I have always tried to do the same thing with my kids. Kids can handle and understand more than we actually think. In fact, they often sense something is wrong and leaving them to speculate is a disservice. I told my girls about your diagnosis first thing yesterday morning. My first thought in doing so was, although Lexi will probably never say anything to Colin, she is an extremely compassionate little girl and it felt important that she know. In fact, at pick up, one of the things she reported was how he seemed yesterday (quiet in the morning, but his usual self after they did a song he likes). I actually hear about him a lot this year. But also, whenever my mood is as off as it was yesterday I like to let them know and why. With my depressions, I do this to hopefully minimize the impact on them.

  • I think it’s good your honest with your kids (although I cannot even imagine). My mother always chose the easier route–tell the kids nothing and all is unicorns and puppies. There were a few times when I was young that I found out things by mistake and I felt incredibly betrayed (and sometimes like I was being treated like a 2 year old).

  • Anonymous says:

    You are so amazing and inspiring. The world is a better place because of you! My life is better by having you in it. Much love &headed cyber hugs! Tracy Horning

  • Carol Sacks says:

    Lisa, this is enormously helpful. These guidelines about communication are important and relevant for a number of situations. I find it remarkable and generous that you are helping others while your own situation is so new. Thank you!

  • Lisa,
    You inspire me with your candor, your strength, your willingness to share your experience. Thank you for being such an immense light in the world. I send you – and Paige, Colin, and Tristan – all my love. xox

  • This is some of the absolute best parenting advice I’ve ever read, whether it’s about cancer or not. You’re just amazing.

  • Teri says:

    I completely agree with Hillary. This is one of the best things I have ever read about helping children deal with difficult and challenging news. You have such a gift for distilling what is most important and then you share it in such a way that is so accessible; and you do all of that while you are under extraordinary stress. You are a marvel. A gift to us all and our children. xo

  • I am grateful to you for posting this blog. It is helpful to patients and caregivers (both medical and lay). We all appreciate your courage and willingness to share your experiences. My thoughts are with you. Otis

  • Jennifer says:

    Thank you so much for sharing your experience, your feelings and your wisdom. I think on some level you know how valuable they all are, but I imagine you’ll never know how much help you’ve offered to so many. My thoughts are with you and your family.

  • I think you should consider writing a book for others with cancer and children. I agree that you’re as clearheaded as anyone I’ve ever met.

    When I had to fly to India for surgery, by myself, I took Vicodin and drank vodka all the way from Los Angeles to Mumbai, India, 22 hours. The Indian flight attendants took care of me because I couldn’t stop crying. People kept telling me how brave I was but had no idea how badly I fell apart.

    You, my friend, are the very definition of brave.

  • Lisa,

    Thank you so very much to using a portion of your days-all-sacred to share tips with regard to supporting children through the diagnosis, relapse in a parent.

    I could NOT agree with you that honest is everything with our children. In fact, I just finished talking with out 9 year old son who asked me. “Mom, what would have happened to me if you hadn’t received a new heart and died?”

    Tears-welled [and] escaped as we talk about what would be different and what would be the same.I reminded him that my love for him will never change, and not eve death can take that from us.

    I confess that I am feeling compelled to be more intentional about putting a few things in place for him, his future should i succumb to heart failure, rejection, infections, or God forbid, a return of my childhood cancer.

    Lisa, You are in my heart-thoughts; I am a woman of prayer who will pray; and I am a woman of encouragement as you think of things that would encourage letting me know. I am sure that you are surrounding my many, but I also know that there is a time for someone relatively unknown, perhaps, the arm of a kindred stranger to lean on.

    I pray you nothing bu the BEST; the right treatment approached, and decades of LIFE [here, now].

    Simply
    Steph

  • miguel says:

    As others have mentioned, I was struck while reading this at how universally useful your parenting and communication ideas are and impressed with not only your grace under duress.I have learned so much and been inspired by your deep knowledge, emotional sensitivity and citizenship. In case I didn’t thank you enough, I am ever so grateful for the advice and interest you shared earlier this about me. Love XO -Miguel

  • Renn says:

    Lisa, I am so sorry you are going through this. You have provided such an invaluable tool in this blogpost — one that can be modeled for all manner of crises. I agree with everyone above me. Your writing and your understanding is so crystal clear, it’s laser-like in its focus. Your words are precise and hit all the chords. You are helping so many, many people with your generosity. Writing a post as extraordinary as this just days after a devastating diagnosis is well, simply extraordinary. Just like you.

  • Oh, to have had you as a mother! Even though I deduced that my father died, no one actually told me. My mother and the neighbor came to drive me home from my piano lesson. I sat in the backseat while they talked in shorthand in the front seat. As you know, 13-year-olds are very perceptive, but there was no one for me to talk to, or who would talk to me.

    Don’t ever doubt whether you are spending your time wisely. For you, that’s instinctual. Just make sure you take time to goof off, try to have fun and just “be.” If we lived every moment with a more immediate time clock, I fear we might not be living to the fullest for ourselves or our family. I’m sure you will find the right balance for that as well.

    XOXOXO,
    Brenda

  • Lori DiJoseph says:

    You are an amazing woman. My thoughts are with you!

  • Everthing you wrote here is so crucial. I’ve used the school psycologists as well during difficult times and they are an invaluable resource. If children are coping well and able to get through their busy days of school and activities, it makes the homelife smoother. Knowing that he had support all around him in the community was extremely comforting to me.

    I’m in awe of how objective you are under the immediate circumstances, always willing to use your experience to help others. I will reading every word you write. Grateful for your brilliant insight. Thank you for that….and for everything you do to make the world a better place.

  • Amy Galloway says:

    Lisa,
    I am following your blogs and admiring your courage. I especially appreciate your advice about keeping the people who interact with your children informed about what is happening. I am a teacher and I care about my students beyond my time with them in the classroom so it is important to know if there is are concerns which can distract them or, as you mentioned, affect their behavior. Thank you for your invaluable insight about all these matters confronting you and your family.
    Thinking of you,
    ~Amy

  • Dawn N. says:

    Lisa, I have travelled around your site, and keep thinking that we have been walking the same trails the past few years… perhaps we saw each other at an overlook?? Did we nod at each other politely and think, gosh she looks familiar??? And then, the thought passed as we went about our days. I too had breast cancer, but first diagnosed in 2004. I too, as of October 2012, have been confirmed to have had the cancer return, spreading to the bone. You mentioned in your prior post that you would comment soon about how you came to your diagnosis, I will be curious as to this process. Mine has been one year of pain, debilitating at times, in my sternum, which started during a bout of bronchitis. I have been to a primary doctor, a gynecologist, a rheumatologist, a pulmonary specialist, a cardiologist, an orthopedic specialist and finally, the ER. All diagnosed me with chostochondritis. Well, I now know that is not the case. The “pulp fiction” needle biopsy to the sternum confirmed this. It is amazing the amount of machines that a body can be put through to figure all this out. Am I wrong when I look at a bone scan where my sternum lights up like a christmas tree and my first and only thought is, wow, I look chubby! LOL. Anyway, I will visit again, and thank you for your posts.

  • erikarobuck says:

    This is incredibly helpful; thank you, Lisa. As always, you guide us like a steady torch while you march through trouble.

    At your heels and at your side. Praying and thinking of you always…

  • Audrey says:

    Really important advice here and delivered with grace and remarkable lack of thought of self. My thoughts are with you and your famiy. Audrey xxx

  • Hi Lisa. My friend Shawna Hudson sent me the link to your blog. I am also living with stage IV breast cancer. I’m 33 and have two small children. I just wanted to say that your advice is perfect. Best wishes.

  • Dawn – I too had bone mets – diagnosed in Feb 2010. I had radiation, IV Zometa, transfusions, Zoladex injections and Arimidex. I also made changes to my diet, lifestyle and started a program of protocols and supplements. In June last year a PET / CT did not trace to any cancer at all. I wrote a book to help women and it is available online at amazon – Metastatic Breast Cancer: From Diagnosis to complete Remission. an Intentional Journey. Hugs and best wishes Denice

  • Mandy says:

    This is so helpful, Thank you so much

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