Time is a funny thing – especially when you’re young with cancer

Nicole B, my dear friend, RIP

Spoiler alert: this isn’t funny. And it’s long. And there’s some profanity. But if you are someone under age 45 battling breast cancer, or someone who loves, cares for or depends on, a young women with stage IV breast cancer, I implore you to read it.  I swear I am normally a more hilarious person, but sometimes life doesn’t feel funny. On July 7th, I lost one of my closest friends, a sister really, and mother of 5 and 7 year old girls, to metastatic stage IV Breast Cancer at age 38.  I was with her (or really her daughters in her home) when she died in the inpatient hospice unit.  It sucks, just absolutely sucks.  She truly had been my lifeline during residency/fellowship and new motherhood and no family support.  I’ve lived away for the past 3 years but scheduled more vacation time with Nicole and her family than I did with my own.  We were supposed to go to Cancun July 10-13, a trip planned in March when Nicole was feeling good.  The month prior to her death I had just written a blog about how I deal with death all the time as a physician/geriatrician.  I can say one thing for sure.  While all human life is equal in dignity, when one of those lives ends the punch death packs for some deaths is stronger.  Everyone’s grief is their own and there is no right way to grieve, or right amount……but objectively speaking, not all deaths are equivalent in weight, and when a child, young person, or parent of dependent children dies, the ripple effects are indeed greater. The tragedy is more.

I know Nicole’s cancer was aggressive from the start, and that even if things had happened differently she still might not have had more time with us. Factually speaking, she did not receive the best care from her initial cancer team.  When Nic called me in Nov 2016 to tell me she found out she had bone mets, she also shared with me that she had first told her first oncologist in the summer prior of her hip pains and for months her oncologist dismissed her complaints. Wouldn’t even order an X-ray, an extremely cheap and easy test.  Finally in Nov when the pain got so bad, her PCP ordered the X-ray.  Sure enough, metastatic disease. When things are going badly either way, it’s pretty shitty for the family, person and loved ones to have to question if things had been done differently would they have been given more time, even just a few more months, while still knowing the disease would take her eventually. I wish Nicole had called me sooner about her hip pains as I would’ve pushed her to demand imaging, but she trusted her physicians and the system. Time is a funny thing, and when you have young children and a husband who depends on you, no amount of time will ever be enough. Nic’s symptoms of metastatic disease presented 6 months earlier than the bone mets were found. At the time she was a 37 year old with a history of recent Breast Cancer with four of six positive nodes. Why the hell wouldn’t her oncologist order a freakin X-ray?  There’s my anger stage of grief shining through. But that’s not what prompted my reflection on time.

Of course Nic switched Oncologists, got 2nd opinions at Sloan Kettering, and saw another Oncologist in a connected system at U Penn.  I’ll spare you the details of her course of cancer.  But for now, what really shocked me was what I witnessed when I flew to PA from TX to be in the appointment 2 weeks prior to her death where her new oncologist was delivering the bad news.  Over the course of about 10 days she precipitously declined physically, prompting her family to call me on Weds June 21st.  I was with her in central PA by Friday June 23rd for her 1:20pm appointment to go over her recent imaging and the results of her spinal fluid.  Her new oncologist was kind, and very smart.  She was trying to compassionately deliver the bad news.  However, in the course of the appointment the MD explained to Nicole and her husband that the testing showed her cancer had spread beyond her bones, the chemo wasn’t working, and very likely the cancer spread to her leptomeninges (the lining of her brain), and that the prognosis wasn’t good. She kept saying to Nicole and her husband, “the prognosis isn’t good, I suggest you take the time now to do all the things you want to do with your girls and your husband.”  Never mind the fact that if the MD had taken the time with Nicole she would’ve realized Nicole was so physically debilitated that she actually couldn’t do any of the things she had planned or wanted to with her family already. Things changed that fast in one week. I had to force an inpatient admit for stat palliative care assistance. But in the consult the MD kept using the word time, as if it meant anything in the context. When no amount of time is enough, saying descriptors attached to time like “not much” or “less” or “short” are meaningless and subjective. With young children, a few years is not enough time and “less” or “shorter” than ideal.

The MD asked, “Are there any questions?”  Sitting just behind the MD and facing Nicole and her husband, I could tell they had no idea what she was saying. I chimed in, “Yes, could you please be more specific with the time frame of the prognosis?” Facing Nicole, she said, “six months.” Nicole’s expression turned shocked, and Nic replied, “Are you F-in kidding me?” She really hadn’t been told, although physically I think Nicole knew she was dying. Two weeks after that appointment, Nicole passed away. I’m glad I knew the 6-month prognosis was a load of crap (and I’m not an oncologist). But I wonder had I not been there to ask the tougher question of a more specific time measurement of prognosis, would Nicole have even been told that? I doubt it the way the appointment was going. I was able to get Nicole admitted for palliative care and symptom control, get her and her husband to discuss her final wishes, help get her admitted to hospice, take care of important but non-priority logistics for Nicole as she was dying, and force her in some of her last good moments to write letters to her daughters. But not everyone has a loved one who is a doctor to call in for the cavalry. And frankly, this was not the role I wanted. I wanted to be able to say goodbye to my friend without having to be the doctor. I wanted to be able to grieve too, and go to her funeral (which I couldn’t because I had to fly home after 2 weeks of being with the family).

When our system fails so many, what happens to people who don’t know better or have someone who will lovingly be honest with them?  When their doctors know they don’t have as much time as they’d like (and trust me, many doctors do know more specifics then they’re willing to say), do they get to say goodbyes, teach their spouses the important bill-pay passwords, write their children goodbye letters or do legacy projects?  Do those people’s deaths who have had stage IV cancer for almost a year come as a complete shock to their families, as if out of the blue they just were healthy then died of a heart attack? Interestingly, Nicole’s daughters were the least shocked by their mom’s death. Kids are super intuitive, but also, they didn’t sit through all the appointments where the docs gave only reassurances. The girls just observed, day to day, and they knew. But do the adults get the opportunity to plan for the worst while still aiming and hoping for the best?  I suspect often not. And that, in fact, is as tragic as a young mother being taken too soon by breast cancer.

Physicians: you are not doing anyone any favors by being vague and offering false hope. In fact, Nicole’s husband felt this approach was actually cruel. If you are not more specific with your prognosis by at least offering measurements of weeks, months, years, etc, then you are not being clear. As I mentioned, time is a funny thing, and when young, a completely subjective concept on how much is necessary or enough.

Patients, sadly, our system is broken. You will need to advocate for yourself. If you have a diagnosis of stage IV cancer, fight for and hope for the best while planning for the worst. The two are not mutually exclusive. Request palliative care assistance early (studies show the sooner Palliative Care is involved the longer stage IV cancer patients survive). Push your medical team for the truth, as best as they can say. If you have people who depend on you, you need to know.

For those who I’ve offended with this post: Sorry but not sorry.  After what I witnessed, these things needed said. My friend Nicole already left a massive legacy of love and light in the brief time she had on this earth. But for my sake and hers, I don’t want anyone else to experience the failures of our system when it matters the absolute most.  When it comes to the heavy business of dying and time cut short, the truth is love, and it matters the most. I hope you can handle it.

 

 

9 comments on “Time is a funny thing – especially when you’re young with cancer

  1. This article resonates so much for me. I am semi retired family practice and was the medical director of a hospice for the year before I gave up my clinical practice.
    I have just suffered through the unbelievable agony of watching my beloved beautiful fun loving 55 year sister suffer inexusably and die from a virulent form of myeloma in South Africa.
    She was never given the true facts about her illness there were diagnostic mistakes such as attributing bone pain to “over exercising”
    Last ditch efforts to rescue her for possible stem cell transplant by having her go through chemo while in full renal shutdown were portrayed as having “three treatments with maybe a few side effects” She was so so ill and so hopeful as she packed her little case with perfumes and comfort items for her admission to the hospital for her last two weeks of completely unacceptable suffering before she died the day after I got back to Houston.
    I am beyond devastated every cell in my body has exploded from this experience!

  2. Thank you for your honesty in writing this, and for your courage to say these things. For sure as a physician this was not a easy task for you. You were not able to attend Nicole’s funeral services, but I will tell you there was so much outpouring of love and support for Nicole and her family, it was very touching. I have known Nicole since the day she came into this world. All 3lbs and 7 ounces of her. She was a fighter then in the beginning as in the end. Nicole’s mom and I were best of friends since the 1st grade. Just as hard as it was for you to watch your friend suffer, I too watched her mom, Ginny go through this horrid disease. Ginny fought for 4-5 years to stay here with her family. I know deep in my heart that Ginny waited to see her Nic one last time after Kinsey was born, before she let go. Never ever did I think that this family would have to witness this disease take some one else. God Bless this family, and God Bless You for being there for Nicole, Torrey, Hailey and Kinsey. One last thing I want to say is, I am a breast cancer survivor and I am one of the lucky ones. One lingering thought I have through all of this is, through the grace of God, that could of been me. Thank You again for your candor.
    Sincerely,
    Karen Jolly

  3. You are do right! I am so sorry for the loss of your friend. I hope you are able to take time and grieve for Nicole. You are correct -she was to young! I do believe that the medical system at times fails our ones although there are many good, kind and caring medical professionals out there. I learned that you need to continue to fight for the right medical treatment even egen you are being told that you are wrong – follow your instincts and fight on!!

    The truth may be painful but at least you know what you are dealing with!

    God Bless Nicoke, her husband and her little girls!!

  4. Jessica Johnston

    July 16, 2017 at 1:01 am Reply

    First of all, Thank you for this!!
    My father passed March 19, 2016 of Stage 4 Small Cell Lung CA (mets to the liver) and this sums up my feelings EXACTLY. He was 60 years old when he was diagnosed on October 19, 2015. We were told in the initial oncology appointment he could have “several years.” He proceeded with chemo because he felt “several years” would be worth it. Everything I read on the internet about small cell showed a much different and worse prognosis than what we were told. After 4 rounds of chemo, he was rescanned and the oncologist informed us the cancer was 90% gone in the liver and lungs, but felt 2 more rounds would certainly achieve remission. 2 rounds later and my father was dead. My father didn’t know who I was, nor could he speak or make his basic needs know, and the oncologist said to me, “I may have overdone it with the chemo”. To an inpatient hospice facility we went, where he passed a couple of days later. We were told he passed of paraneoplastic syndrome secondary to the chemo. I so greatly wish the oncologist wouldn’t have pushed the chemo onto him, or he would have given him the truth. While it would have been very hard to swallow, we could have had a more honest 5 months. I was 21 when he was diagnosed and I knew little of how to prepare a funeral or how to have the tough conversations about death (that needed to be done) with my father, but if the doctor would have told us a true time frame, I believe we would have had the strength to have those discussions.

    • shannontapiamd@gmail.com

      July 16, 2017 at 9:07 pm Reply

      Thanks for reading, and commenting, and sharing your story. I’m so sorry for your loss.

  5. Beautifully written and incredibly sad. I am so sorry for your loss.

  6. I wholeheartedly agree with what you’ve written. As a hospitalist, I often have to have the discussion of time. I always tell people what they can expect, I preface it by saying I don’t have a crystal ball, but if they were to pass in the next few (days, weeks, months) then that is expected. And if you have more time- then it’s a blessing and don’t take time for granted. Spend time with family, get things settled. I feel that these conversations about time should occur with their outpatient doctors ideally. If not I’ll step in and have the conversation that we need to.

  7. Thanks Shannon for being so terrifically blunt. I still remember talking to my patient with stage four Lung cancer. Despite multiple meetings with oncologist and surgeons, she still did not realize how short her time was. I tried to explain to her what was going on. Finally I showed her the chest x-ray where one entire lung was whited out due to massive disease. All of her sudden her face changed. She understood then that this was going to kill her, and soon.
    I think she was thankful that someone finally told her. But I was upset…what did all these other doctors tell her? I’m primary care, not an oncologist. That’s at least the 3rd time I’ve been the one to tell someone they are dying when they are actively seeing a specialist for the thing that is killing them…
    Sometimes our job just sucks.

    • shannontapiamd@gmail.com

      July 16, 2017 at 9:06 pm Reply

      Thanks for reading this Stacey. And even when I did FM I did have younger patients who really were not told, at least in a way they understood, what was really going on. One of the patients I got the closest too in residency first presented to me with a diagnosis of Stage IV lung cancer, already eating through her cervical spine. I was compassionately honest with her about her options and prognosis. Initially she was angry in the visit (understandably), but rather than letting it ruin the relationship I just explained to her that I was fine if she was angry, but that it still didn’t change what was going to happen and that I was trying to give her some opportunity in determining how it did. After she came to me more than her oncologist, and only after she was in CV did she stop.

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