The Coping Dance: Cancer and Mental Health

It’s been months since I could do this. Write. Aside from tweeting and the occasional Facebook post or text, I could not work up the mental stamina to write more than a few paragraphs which I reserved for personal emails.  It bothered me, but I blamed it on the chemo and convinced myself that I really had nothing of interest to say. Then I noticed there were other things I couldn’t do such as planning social events with friends and family, or having an honest laugh, or feeling joy when hearing someone else’s good news. These were things that gradually floated out of my reach until I couldn’t figure out a way to get them back.  On the outside, I suspect I appeared to be in solid Coping Mode: doing the dance.  But somewhere on the scary inside, I suddenly felt as if all my relationships, my passions, my reasons for living, were in danger of becoming permanently obscured by the relentless demands of this disease.

Since 2006 I have been treated for breast cancer in three of the top cancer centers in the country:  Memorial Sloan Kettering, Yale’s Smilow Cancer Center, and MD Anderson.  I also spent years being treated at Greenwich Hospital when I believed I had “survived” my first diagnosis of Stage 2B breast cancer. Throughout these eight years, having been seen by hundreds of health care professionals through countless rounds of chemotherapy, ten surgeries, and no less than nine trillion doctor appointments, I was asked once, and only once, about severe stress or unusual depression.  After I replied yes to both (which happened to be during a chemo infusion), a social worker stopped by and listened to me blubber for fifteen minutes – then promptly gave me the name of a support group that meets an hour from my house. I am not making this up.

I’m inspired to write today because my query is this: Why is there not a standard protocol whereby the mental health of every cancer patient is assessed as regularly and thoroughly as our blood counts, and integrated into our treatment plans? How can we who are experiencing the pure hell that this disease rains down on our world and psyche be expected to ask for this kind of help? Or know when we need it? Or what kind of help is available? I fear a good many of us persevere in silence, bolstered by the constant refrains of how “brave” and “strong” and “courageous” we are.  We’re programmed to think that displays of weakness, fear or sadness are the mortal enemies of “staying positive”- which is supposed to keep us alive longer, or some other bullshit.

I also fear that if an oncologist or nurse asks us how we’re doing, they feel they can check the box as long as we don’t specifically say that we’ve purchased a firearm and are having suicidal thoughts. But more than anything, I fear that assumptions are being made throughout the cancer treatment processes that are inexcusably stupid.  Cancer patients are all doing some version the Coping Dance every day, but that doesn’t mean we’re not potentially in some serious emotional pain.  Doctors know this. Social workers know this. Why is it so consistently missed or ignored?

Case in point, on the cold, February afternoon that I was diagnosed with Stage IV metastatic disease, I was in the hospital with a tube in my side, oxygen up my nose, and morphine in my veins, recovering from surgery to remove fluid from my chest and lungs. I received and absorbed the devastating news from my doctor, alone. I asked what I presumed to be the appropriate questions about “survival rates” just to have something to say, but I don’t really remember much of what transpired after that because my head and heart just kind of exploded on impact. He’d been treating me for years and looked awfully uncomfortable. I actually felt bad for him. He left my room looking sad and helpless. And I sat paralyzed in my bed watching him walk away. The same evening at around midnight, a nurse came in to check on me and I asked her if I could please speak to someone.

“What do you mean speak to someone? What is this about?”

“Anyone, you – just someone, I don’t care who it is. I need to talk about this. I have to face my family tomorrow.”

“I can call a priest.”

“I don’t need a priest and I’m not religious. Isn’t there anyone..?”

“I’ll see what I can do.”

Ten minutes later, a chaplain walks in to my dimly lit room and asks quietly if he can pray over me.  Poor man. I told him he could stay only if he would promise to just listen, stop with the praying, and never once mention God. He was very gracious for most of it but broke his promise at the end and threw in some preachy stuff that I let slide. He was, after all, nice enough to listen to my anger in the middle of the night. But I couldn’t help think that someone should have been prepared to speak with me after being told that my cancer had spread to my liver and chest and was incurable. I mean, even my doctor was struggling with the news. Why wasn’t there someone trained and certified to coach, counsel, listen, help, and dare I suggest, follow up with me after I got home. None of this happened. It was all about scans, tests, tumor markers and pain killers. Not a whisper about how to address my feelings.

To further illustrate my point, after I had gamma knife radiation surgery on my brain last month, the follow up questions from the nurse who called me at home several days later were as follows:

“How are you doing, today?”

“Okay.”

“Any headaches or dizziness?”

“No.”

“Nausea or vomiting?”

“No.”

“Changes in vision or hearing?”

“Nope.”

“Great, Jude. Glad you’re doing so well.”

The end. That was it. No one bothered to ask me if suddenly having three fucking brain tumors had caused any, oh, I don’t know, STRESS?  It’s kind of unbelievable when you think about it. What is it that really matters, here?  If you successfully zapped the tumors in my head but I feel like throwing myself from a fifty-story building worrying about them coming back, what have you really accomplished?  Unless you spent every day with me, you would probably never have known that for the last few months I had been coming apart at the seams.  When the cancer spreads from your liver and chest to the brain and bones, its bases loaded. Luckily, a good friend who is so intuitive and special I wish I could clone her, sat me down and suggested I speak to a psychiatrist so I could get some help. She recognized that any semblance of joy had left my eyes and I couldn’t pull off the Look at Me I’m Coping dance anymore.  I told her I didn’t feel I needed to talk to anyone but she politely and directly let me know that at the very least, I probably needed an anti-depressant. Something that might help me recover what I had lost. I had never taken a maintenance drug for mental health before. In the past when I complained of stress or anxiousness about surgeries or tests, someone would write me a prescription for Ativan or Xanax with the instruction to “take five milligrams as needed.”  For a time this worked. But metastatic cancer is a round-the-clock shit show with no commercial breaks, so this option ceased being effective right around the time I found myself wanting to crush them up and bake them into pies.

Mental health matters in cancer treatment. There were days when I would look at the list of drugs I take and think, “What’s really the point?” Or when friends and family would go out of their way to share time with me and instead of enjoying their company, I would become silently consumed with anger and resentment because all I could think about was how their lives will simply go without me after I’m gone. Or when getting out of bed in the morning became my worst nightmare because it meant having to face another day of the Coping Dance, when I used to have a job, a future, all my lady-parts, hair, mental acuity, and self-esteem.  It matters because it’s the difference between having a life and just waiting for it to end.

I met with a psychiatrist and started on an anti-depressant medication about six weeks ago. It has changed my outlook, calmed my spirit, and allowed me to view my life through a lens that is no longer entirely grayed out by grief. I can participate, feel joy, and hold up under the scrutiny of loved ones who know the real me.  It’s not perfect. I still have bad days. But now I can laugh out loud and no longer feel like I’m phoning it in. I am re-connecting with the world around me experiencing a full range of very human emotions. Why it took me so long to figure this out, I don’t know. But I sure wish one of my zillion health care providers would have taken the lead to help me get here sooner. It’s really good to be back.

And for however long it lasts, to feel like writing again.

 

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53 Responses to The Coping Dance: Cancer and Mental Health

  1. Jude, this is so well-written and so important. I agree, mental health assessments should be a part of every oncology visit. I know you will be helping so many people by sharing this story and showing they are not alone. My favorite sentence: “metastatic cancer is a shit show with no commercial breaks.” Yes, indeed.
    I love you…

  2. pjules1963 says:

    Jude, I live in Canada, and here mental health assessments are a very big part of our care. I had a social worker assigned who I saw bi-weekly, an Oncology Psychiatrist, and if I wished a Spiritual Worker (which apparently has nothing to do with Religion,) not to mention various support groups and services available in your City and Hospital. Because of our health care system none of this costs you anything. We do not have the luxury of choosing our Oncologists or firing them if we do not like them, and we also don’t get quite as many scans and options for treatment as you do, but I will take our system which has incorporated in the mental health aspect any day over yours, and consider myself lucky even if we have much less control. Stage iv Cancer is a terrifying place to be and only those of who are there or are professionally trained can really truly understand how difficult it is. I do hope your health care system recognizes the importance of this soon because I know I would not have been able to cope without the help that I received.

    • judesthinkin says:

      Glad you are getting what you need! Your system sounds much more civilized. I hope you are doing okay or as well as you can. I agree that it is hard to find understanding outside of the Stage IV circle. Namaste.

  3. AnneMarie says:

    Jude,

    I send you love and support. This is so powerful and it should be printed out and put in the office of every doctor treating a cancer patient, especially those with mets….

    xoxoxox

  4. jacqui722 says:

    Jude- beautifully written, as always. Your words reach out and touch me. Please keep writing- your voice is so important and I couldn’t agree more with this post.

  5. DebZ says:

    Thanks for writing this all. I’m just beginning on my journey now – have had the surgery and am about to start chemo. My breast care center includes a clinical psychologist and psychiatrist, along with massage, acupuncture, nutritionist, yoga. I was somewhat dismissive of pretty much all but the last two, but your writing has changed that. Thank you again.

  6. judesthinkin says:

    Thank you, Deb! I am sorry you’re on this path but it sounds like you have access to great care. Be well and ask for what you need. Always.

  7. Elaine Pennarola Cyr says:

    Thank you for this. I hope to share it with my own health care providers.

  8. nancyspoint says:

    Hi Jude,
    Every person who hears those words – you have cancer – should be seen by a mental health care professional as part of treatment protocol. It’s interesting that the commenter from Canada says this is part of care there. Thanks for writing about this important topic.

  9. Mary Jane Rooney says:

    Thank you Jude…you hit every topic..When I was dx with Mets to Bone last year after a 2 year window of initial dx…the residents at the teaching hospital kept asking “Why are you crying…doing it too much.” after I had a titanium rod placed in my femur and hip. I remember the face of my oncologist also..he never thought either when I was complaining of right leg/hip pain that it was more than sciatica. Yes thanks again for writing on this important topic.

    • judesthinkin says:

      Ugh. So sorry. They just don’t get it. I hope you’re in a better place with it now, or at least on the path to get there. A mets diagnosis just doesn’t fit with all the rest of the breast cancer jargon. Be well.

  10. Kimberly says:

    Yes. This. Perfectly put. I think that anyone with a cancer diagnosis should have access to mental health care but sadly in this country that just doesn’t seem to happen. I’ve tried to find help fot years now but thanks to craptacular health insurance & a ridiculous high deductible it appears I’m on my own with it. Thanks so much for this post. May I share it with my little group of readers?

  11. The Accidental Amazon says:

    Amen. No one asked me either. I had to chase down the right help myself. Great post. Kathi

  12. Stratafied says:

    This is such an essential point. So many people are going through so many different things when facing cancer – I mean, from family to work, to long-term plans, to insurance fights – it all just eats up your brain, and you don’t even know what “OK” is anymore.

    I recently discovered that pediatric hospitals have this great, amazing position called “Child Life Specialist”. They’re there to help kids understand what’s going on, help parents with stress, play with kids and basically keep people sane (there’s a lot more to it than this, but that’s my basic, basic summary).

    I wondered through months of treatment why there was no help. No one who was going to help me just cope with what was going on. If I didn’t need some sort of medicine, scan, or physical treatment, what was I talking about?

    I really hope your great words get shared to oncologists and hospitals everywhere. Thanks for saying what I haven’t been able to articulate.

    • judesthinkin says:

      Wow, I’m so glad this has touched you and so many others. Not at all the response I expected. How awful that this is such a typical scenario. My sister works in a pediatric hospital and the “team care” approach includes everything including nutrition. I guess they think once we’re adults we can figure this stuff out for ourselves. I hope you’re doing okay. If you’re not already involved, try the #bcsm group on Twitter. Very helpful community.

  13. Debbie Konrad says:

    Thanks for sharing…I was diagnosed 5 years ago with an incurable, chronic, treatable while it responds to treatment, type of blood cancer…I know the dance well. I had 2 years and 2 months of treatment to beat back the beast, and last year found out that I have developed a complication of my disease that requires me to have IV treatment every 3 weeks for the rest of my life protect me from infection… 1 year after my dx…the walls came crashing down and I finally decided that I had to try the anti-depressant that my therapist thought I needed…it worked wonders. I am generally in a better place now emotionally…I try hard to just take it a day at a time…dealing with all the doc visits, treatments, tests, but trying really hard to live life not thinking about it when I can…I feel like a juggler sometimes, trying to juggle too many balls…but I am determined to not allow cancer to be my career…though it is trying….keeping you in my prayers….

    • judesthinkin says:

      Hi Debbie – I doubt that anyone who is not “in the soup” as I like to call it, understands how much baseline anxiety there is in something as simple as seeing a doctor. I am glad you’re at least emotionally feeling better. Thinking of you.

  14. skeptic4557 says:

    Jude, this could not have come at a better time for me. I am now in remission from grade 4 Mantle cell lymphoma after 7 rounds of heavy duty chemo and a stem cell transplant. I should be over the moon. I have a loving wife and family and good insurance cover. After getting well enough we took ourselves on a Mediterranean cruise to celebrate. I got food poisoning the first day and after 3 days ended up on a drip in the ships hospital. Then my world came crashing down with anxiety attacks. So many on the blogs I follow are in worse shape than me, how could I fall apart. I got home and started on anxiety meds supported by Valium but there have been very dark days as the drugs slowly started to work. I know enough about how depression works having suffered it from work stress 20 years ago, but until you get your chemistry right, all the self talk and outside support just doesnt work. I am finally coming good and a rational happier self is emerging again. I write this to thank you and remind the 30% odd of cancer sufferers in remission and out, that depression and anxiety attacks are not your fault. It’s one more symptom/side effect that some get and some don’t. Help is available if you ask and never me afraid to ask. All the best with your fight Jude, love your work.

  15. Pilgrim says:

    This is so true it brought tears to my eyes. I still can’t write. Or read for that matter. But I’m doing fine. 🙂

  16. Pisces says:

    This is very touching and I felt I am reading about my life! I was diagnosed with Leukaemia in 2001 and underwent intensive chemo the discussion was all about drugs, tests and side effects. I was only 23 and in prime of my youth. I don’t think anyone had the time to listen to me. I was made to speak to a support group which depressed me further as none of them could understand what a 20 year old feels with cancer. I just drew myself into a shell.

    The treatment is over and its 10years on..I may have recovered, my treatment is non-invasive now. I have a career but I am not yet healed.

    I get bouts of depression and I still cannot talk about it as the ‘ coping dance’ is still on…I am supposed to feel ‘LUCKY’ for having survived! Which I have to constantly remind myself.

    My life has changed I can never give birth due to early menopause, My hair have thinned…these things appear trivial to most people…as they think I have survived!

    • judesthinkin says:

      I get it. And coping with this shit at 20 is unthinkable. It is hard for others to understand. But please know there are a lot of us that do! stay in touch on Twitter if you like @JudeCallirgos Be well.

  17. Nandini says:

    I could relate to your mental health condition as I too get bouts of depression, I was put on antidepressant which made me more sick as I was even unable to do my daily chores, I slept for the whole day, this was the effect of antidepressant. I stopped taking the antidepressant and am on alternative medicine. I am a Gist cancer patient since 2007 and on oral chemotherapy.

    • judesthinkin says:

      Sometimes you have to keep trying until you find something that works for you. And sometimes. there are other things we can do to help ward off the difficult thoughts. I hope you’re tolerating your oral chemo okay. Mine was awful and I had to stop. Be well.

  18. Anonymous says:

    Jude – you are right-on as always – please take this message to the mountaintops in your upcoming keynotes and megaphone it to the world. I just posted this on FB as well: Riveting and important piece by author, cancer-fighter, person-extraordinaire and one of my bestest friends ever Jude Callirgos Robinson on how after 8 years of fighting and continuing to fight this dreaded disease she had an aha moment that apparently the US mega-health industrial complex has never had: the dire need for mental health care for cancer patients (and others with serious illnesses). Hello: wouldn’t you want your doctor to ask you how you felt and give you options to deal with the shock, fear and desperation of being diagnosed with an earth-shaterring disease? I have encouraged Jude to take this blog and this message into her upcoming keynote addresses – this is a message that MUST be heard by the healthcare establishment. Period. End of lecture.

  19. GlobalEthicist says:

    I meant to leave my name for the previous post posted as “Anonymous” 10:14am 😀

  20. judesthinkin says:

    Thanks ABB. I appreciate your feedback. It really is kind of shocking how many are in the same boat. Thanks for sharing this on facebook and with your colleagues. Till next time. : ))

  21. tessellis says:

    Happily, the crew at Washington Hospital Center in DC mentioned it to my husband on a number of occasions during his round with base of tongue cancer. Luckily for us, he is doing well now, but during his horrendous two year ordeal, I wasn’t sure how things would turn out. getting mental health support – particularly if you are facing this alone – is as important to me as any medical options you face. I wish you well on your journey, and thank you for this much-needed and beautifully articulated piece.

  22. judesthinkin says:

    Thank you for the feedback and I’m glad he’s doing well. It really is such an oversight but good for them (WHC) for making it a priority for you both. Please share this with anyone who you think it would help.

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  24. Anonymous says:

    Jude,
    That was a beautifully written article. I am a Gist patient with several Mets all over the body! I could relate to all you have written and feel all the pain (not only physical but emotional too !)only didnt know how to put it in words as lucidly as you have! The master piece was “advanced metastic cancer is a round the clock shit show without any commercial breaks!”
    Bakul

  25. judesthinkin says:

    Bakul – I am sorry to hear about your diagnosis. There are too many of us, to be sure. I hope you’re getting the emotional help and support you need. Especially around the holidays – things can get tough. Be well and thanks for your feedback! I’m also on Twitter at @JudeCallirgos if you want to stay in touch. – J

  26. elinasicons says:

    You write so beautifully!
    I wish you strength and joy ❤

  27. Jude, I am sorry it was so difficult to find the help you need. As another commenter said, in a Canada it seems like mental health is regularly checked and help is easily available. In fact, I availed myself this week after having a rough time last month with sepsis.

    I wish you all the best and look forward to more of your writing.

    ~Kate

  28. helensamia says:

    In Australia they are addressing this issue by having Psycho-oncologists …. psychologists that are trained in the area of cancer …. in the hospital to be there to help with just these issues.. Also the cancer council has a helpline where people can be allocated 6 sessions with a cancer counsellor which the cancer council pays for.. After this people may wish to pay for more sessions themselves but at least they are connected with someone trained to understand and listen..I am a Cancer Counsellor here in Australia… My work can be face to face, telephone for rural clients , home visits and hospital visits… My background is applied psychology and having had cancer myself it gives me greater understanding… I see clients who are just struggling and the difference it makes to just talk to someone is amazing… People will talk about all the fears that they have but they don’t feel able to talk to family and friens.. If I feel medication is needed I will refer to their local doctor… It is a wonderful program and one I wish had been a variable to me … Like you 12 years ago no one sat down and let me talk!! Take care … Helen

  29. susan says:

    Well said. So much depends on where you end up. I had no support from the medical community when I went through a double mastectomy and treatment (I’m 2008). A friend just had a lumpectomy and both her and her husband had a “stress manager”, weekly massagess, among other support.

  30. Anne says:

    Mental health matters in cancer treatment. YES! We’re struggling with this right now in my family and I’m trying to encourage my husband (with colorectal cancer) to get on anti-depressants. We had the same experience with them recommending a support group an hour away from us and it was focused on breast cancer even though patients with other cancers and caregivers were ‘allowed’ to attend as well. He never went…

  31. JOY says:

    I cannot agree more–having counseled cancer patients, esp Breast cancer patients I concur with everything written. However it is now the psychiatrist that carries the power…trying to get insurance coverage is not longer a couple of pages and a few codes, there are over 700 codes and insurance will drag their feet. I feel for you esp what you wrote and as recently as this past week three more women battling breast cancer. some without health insurance. If anyone resides in AZ please contact AZ Institute for Breast Health, second opinions are free and their entire focus is the health and wellness of the breast cancer patient.

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  34. Eirini T. says:

    Wow. I am a 18-year old girl, dreaming of becoming a doctor and I visited your blog completely by chance, but I will remember this day for all my life, as the day that I learned what being a doctor really is. Your words were so powerful, thank you for this. Hope you have everything you need and deserve. Take care xxx
    Eirini

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