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?”
“Any headaches or dizziness?”
“Nausea or vomiting?”
“Changes in vision or hearing?”
“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.