Dying of Cancer

I hate the phrase "dying of cancer." Someone used that phrase in a conversation today, talking about a friend's husband who she said was dying of cancer. The image of an emaciated man curled up in a hospital bed, eyes staring vacantly, came to mind. But I wonder if really the man in question was sitting in a wing-back chair, watching his favorite show.  He's not dying in that chair. He's living, watching TV, going to treatment every few weeks, his doctor telling him he's doing okay.  Either way, the same words are used to describe the same cancer patient, all of us are seen as dying of cancer.

I remember when Valerie Harper was diagnosed with metastatic lung cancer to the brain in 2013. Nasty diagnosis. I know for me, I wondered how long she'd survive. But Harper took a different view than everyone else. “Don't go to the funeral until the day of the funeral," she stated. And that's how she lived her life, until she finally succumbed to the disease in 2019, 6 years after her original metastatic diagnosis.

Words matter. How we talk to ourselves and others about the disease make a difference in how we experience our own cancer, how others experience our cancer. When I was first diagnosed with metastatic breast cancer in 2012, my father and brother both began calling me once a week, an unusual occurrence since I never heard from my father and rarely heard from my brother. Both men are doctors and I assumed they were calling out of guilt, offering belated support. It took me several years to realize that both men likely were calling out of guilt because they assumed I'd be dying, soon. Thank God I didn't realize what they were probably thinking. Because my own belief that I'd survive was key. If I had believed that I was going to die quickly, that would have increased the odds that I would have gone ahead and indeed died soon.  No guarantees. People do survive in spite of what they believe. But it sure does help, when the chemo is going in, to think that somehow, some way that chemo will kill the cancer and help me stay alive. It's certainly more pleasant to go through chemo that way.

So I tell myself and others that I live with cancer. And with that in mind, I change as many of the cancer words that I can.  When I go to treatment, I say that I am going to spa (this can be confusing since I've had many believe I was literally going for a spa day with clay masks and massages). When scans find a new area of cancer, usually this is referred to as progression in the medical profession, evoking images of the cancer uncontrollably spreading, eating the body away. But I see cancer more like something that can come and go. In the world of multiple sclerosis, the phrase used when the disease recurs is "flare up," indicating there are times when the disease comes and times when the disease is more subdued. So flare up is the term I use when new spots are found. With good treatment, so far, these spots have been knocked back and I have been able to go back to living life.

Definitely, there are cancer patients who are diagnosed and they quickly decline and die. But research has progressed to a point that there are many Stage IV cancer patients who do comparatively well for years.  As one oncologist put it soon after my diagnosis, doctors just don't know how a patient is going to do after cancer is found. It depends on the biology of the tumor and the biology of the person with that tumor.  I know people with metastatic breast cancer who are still doing well after 20 years. It can happen. My challenge lately has been that after 10 years of living with this disease and a recent flare up, I'm wondering if my time is up. I gotta tell you, thinking that I might be about to decline and die is not a fun way to live.

An ex-boyfriend of mine had a grandfather who was diagnosed with cancer and believed he was going to die, so decided not to waste money and buy anything new.  For 20 years that man did not buy anything new. Twenty years. I still wonder to this day if that included not buying new underwear (I do hope he did). Can you imagine though, living life believing you're imminently going to die, so you sit down and decide to stop living while you're still alive? That's not how I want to live. Yet I find myself lately basically doing just that. I've started to wonder whether I should renew subscriptions, whether I should plan a trip, whether I should adopt a new dog once my 16-year old Chihuahua passes on.

So once again, I have to figure out how to live with cancer, in spite of a recent flare up of spots on my ribs (these were treated with Cyberknife radiation). I need to evict the death knell from my own head. I need to think of these last several months as a flare up that has responded to treatment, and that I'll figure out how to keep enjoying life, even if I've got a few new side effects added to my card.

When I get into one of these moods, which isn't often, I remember the scene from the movie Monty Python and The Holy Grail in which a villager attempts to hand a sick neighbor over to the death cart master in order to claim money for the find. "I'm not dead yet," the sick person disputes, spurring an argument as to how dead he really is, the sick person continuing to vehemently insist that he is not dead.  Every time someone treats me as if I am one foot in the grave, or if I begin to believe that about myself, the cry "I'm not dead yet" rings through my mind. Because I am not dead yet. I need to believe that. Because whether I live 5 more months or 20 more years, I don't want to live it expecting to die. That's no fun, and, frankly downright depressing.  And certainly, I want to make sure I feel alive enough to at least buy myself new underwear.

Cancer Gossip

Because I do not look sick, once in awhile I get to enjoy the experience of being talked about. Not directly, but still, the topic is about what is happening in my life. Today, for instance, I logged on to an Alcoholics Anonymous Meeting via Zoom. It was a new meeting for me, so no one on the call knew me or my situation. The women chatted amongst themselves, talking about their day, their going-ons, their lives. Part way through the conversation, one of the women asked about another woman who was not at the meeting at the moment.  
 
A bit of a hush went through the crowd, and another woman replied, "Oh, you haven't heard. She was diagnosed with Stage IV cancer." A collective moan of misery seemed to go through the virtual room.  The sense of pity and sorrow was palpable. Now I'm not saying it wasn't right or decent for these women to feel sorry for their friend.  That is a good thing. But, still, I was there, someone who has been dealing with Stage IV metastatic breast cancer for eight years. And hearing that "she's dead" energy was certainly not what I needed at the moment. The other women didn't know about my situation, so I can't fault them. It is a fact that a diagnosis of Stage IV cancer of any kind is a horrible thing. For too many, it is a fast decline and horrible death. I get it. Not good news, and certainly something that should engender sympathy.

In my case, however, I have been very, very lucky. Thanks to the hard work of life-saving medical researchers, I've been allowed to continue my life with good quality, relatively few side effects, and the ability to keep working for eight years, although I've recently left work on medical leave. This is a different story of cancer. There is a good chance that I will die earlier than my family's good genes would have allowed, but, still, I'm here. And the me that is here is tired of hearing about cancer and tired of hearing the automatic pity fill the room when the news of a Stage IV diagnosis is brought to light. Oh, for one day of no cancer pity, misery, or conversation. That would be a day of true relaxation.

Generally I do not talk about my cancer diagnosis. I've discovered the hard way that it's a bit like admitting to a mental illness. People make automatic assumptions about me, and too often I've had the tone or look of pity thrown my way. I'll never forget being introduced to the new head of nursing at the infusion unit I had been going to for several years. In a medical setting I will throw out my Stage IV diagnosis in my intro to a key person just because it's helpful for them to know this detail in their work with me. This nurse had previously worked on the hospital's oncology floor where she had dealt with many other cancer patients. Thinking about it now, I realize that she likely had been dealing with patients who were not doing well, those sick enough to need a bed in the hospital's oncology unit. But in my case, I had been living a life of targeted therapy, continued work, a recent marriage, and nice vacations. We were coming from different places.  So, based on her experience, when I told her that I was one of the Stage IV folks in the infusion unit, her look of pity was immediate and piercing. And my reply was just as immediate.

"I don't need pity," I said. She was slightly embarrassed and chastened, and with a quick apology, she walked away.  The gap between us was clearly my lack of knowledge of her previous cancer experience dealing with probably very sick patients, and she was clearly not realizing that she, as a medical professional needs to be aware that her patients likely look to someone like her as a barometer of possible survival and wellness.  In this way, I have been very lucky as well. The nurses who worked with me for the first several years treated me the same as any other patient entering the infusion unit. They knew my survival would hinge on luck and good treatment, so didn't make assumptions on how I was going to respond.  They joked with me, asked me about my life, behaved as if I had the same chance of survival as anyone else. Clearly, I responded well.

Cancer is a complicated topic. As I said, many with a Stage IV diagnosis do not do well. But there are others who are biologically lucky and respond to treatment. Sadly, currently there is no way to tell who is going to have which response.  The trick of living with metastatic cancer is how to walk that thin line of which way will it go. Having strangers oooh and aaaah in pity does not help with this at all.  I was tempted, during today's virtual meeting, to stand on a box and tell those women that they have no idea how this friend of theirs is going to fare. The best thing they could do for her, as a friend, is offer concrete support (cooked meals, grocery shopping, rides to appointments) and the hand of quiet support. But I did not stand on a box during today's Zoom chat. In fact, I didn't say anything at all. Frankly, sometimes I'm just tired.

I still don't know how to handle it when pitying cancer gossip happens and I'm in the room.  In the past I have given myself permission to leave when the topic of cancer comes up, and I can still do that.  So the question is why am I writing this?  I guess it's just to let people know, from a cancer person's perspective, what it's like to be the unwitting subject of a conversation.  Truth is there's really no way to know who is dealing with what illness at this point in time since targeted therapies are much more common, and these leave a person looking like anyone else (no lost hair, fewer side effects, etc.). Along with this, old outcomes of cancer have also changed. New therapies mean more people are living longer, better lives.  So next time you hear about someone's cancer diagnosis, you can assume that this is hard news and that the diagnosed does need support.  But don't assume an automatic immediate death sentence for your poor friend. You never know. That person may just outlive you. And you'd be offering a great kindness if you treated that person like any other friend going through a rough time, rather than a friend who has one foot in the grave.  

Because as Valerie Harper said, after being diagnosed with metastatic lung cancer to the brain, "Don't go to the funeral until the day of the funeral." Remember, Valerie Harper lived six years after this Stage IV diagnosis, working much of that time. So it was a long journey to that funeral.

Angels in Disguise

Riding the metastatic roller coaster can be challenging, to say the least.  As my friend Shera Dubitsky, a wonderful counselor at Sharsheret describes it, metastatic cancer is always there. It's like a radio that is always playing. Sometimes the volume is low and sometimes the radio is too darn loud.  For me, recently, the volume on the metastatic cancer radio has been too darn loud.

What that translates into is constant worry and an inability to sleep, which only adds to the radio's blaring sound.  This anxiety is certainly understandable.  I have just switched treatments, which has yet to be proven as working (scans are in December), and have been having to adjust to the side effects of this new treatment (Perjeta is particularly known for causing gastrointestinal issues).  On top of this, I've also just switched to a new cancer center only to find out that the new oncologist has a tendency to not listen to my concerns, it's a bit her way or the highway, and that the system has some confusing and strange rules such as all patients need to be out of the infusion center by 4:45 pm since all the doctors have left by then, no matter how the patient might be faring after their treatment.  My guess is that this rule is based on concerns about liability and the desire is to transfer that liability on to the street or to the local ER.  So I have been wracked with anxiety and concern for multiple reasons, and the result is that I have been spending my nights plagued by high-level panic and very little sleep.  This has taken its toll.

This last Friday was one of those nights.  I was up most of the night, panicked, attempting to get my mind off thoughts of the future by listening to music, reading, or just sheer power of will.  It wasn't working.  By the time my alarm went off Saturday morning I had gotten maybe 3 or 4 hours sleep out of the 8 I typically need.  I was exhausted, but once day comes, I usually can get up and go about my business.

Saturday mornings I attend an Alcoholics Anonymous meeting and I've committed to bringing a pint of half and half to the meeting for the morning coffee that is provided.  I parked, went into the local grocery store, and walked back to the dairy section.  An employee was working in the area, cleaning the glass doors of the cooler and re-stocking shelves.  The half and half was on the top shelf of the cooler, and far back, so my 5'4" self could not reach the pint.  I asked the employee if he could reach it for me.  He turned to me, said a few words, and then pulled the half and half off the shelf.  He handed me the pint, looked me in the face, quickly touched my shoulder and said, "Take it day by day."  At first I thought he was making a general statement to me, something he said to everyone, like "Have a blessed day" and I didn't think much of it.

But he continued by saying, "Whatever you're going through, know that there are people who care about you. Give it all over to God."  My mind registered shock.  I thanked him and then I walked away.  As I walked down the grocery store aisle, the shock increased.  How did he know I was in distress?  As I continued down the aisle, I almost broke into sobs.  I paid for the half and half at a self-serve checkout to avoid possibly breaking down in front of a clerk, and I rushed out the door.

Later, at my AA meeting, I told this story and then I finally cried. This man working in a grocery store did not know me, yet he had somehow sensed the yawning fear in my soul and spoken words of comfort to me.  He had provided the comfort I so badly needed, a human voice telling me that somehow everything was going to be all right, that all I needed to do was take it one day at a time.  That is the key to living with such a horrible truth as a terminal disease, take it day by day. But it is easy to move out of day by day and into the wreckage of my future when the disease becomes challenging.  This stranger was helping me to move back into a place where I had a little bit of control, how I dealt with the cancer during that one day, and letting my fears go to some other place, a higher power, God, or whatever you call it.  To tell you the truth, one thought I had as I walked out of the store was that I should invite that man to move into my house so he could say this to me every day.  I could use hearing this wisdom every day.

However he knew my story, he spoke a series of blessed words to me, words that save my heart and soul, and I am grateful.  He may have been stocking shelves in a grocery store, but to me he was an angel in disguise, a reverend, a rabbi, a teacher. Perhaps he needs to put down the milk cartons and pick up a preacher's stole instead. While the world does need milk, in my mind it is in greater need of words of comfort, and I am very grateful that that is what he gave to me.  I can't even think of how to repay his kindness, but I am very, very glad that on a Fall Saturday morning, after a night of anxiety driven by lack of sleep, I went into a grocery store to buy a container of half and half that was too high for me to reach, and I asked for and got the help I so desperately needed.  Thank you.