Courage and Love

Who has more courage – (1) the cancer patient who presses on with grueling treatments that are of dubious benefit in the infinitesimal hope that they will prolong life until something better comes along, or (2) the cancer patient who simply walks away, choosing to feel good for as long as she can and then seeking palliative treatments only to mitigate pain before the inevitable happens? This is a question that has plagued me for nearly as long as I’ve known that I have cancer. As you may have surmised, I put a great deal of weight in courage and bravery. I want to be remembered as a courageous person, one who, instead of running from cancer and death and begging for my life like a wild, crazed animal, stood there and stared them down, all the while acknowledging and embracing the reality and my fear, anger and sadness that is reflective of an aspirational inner strength, dignity, grace and beauty. But which path produces that result? Based on how we as a society seem to love sports stories and movies about protagonists overcoming impossible odds, I believe the general consensus and more popular view is (1). I understand that – the long-suffering patient who endures so much to spend just one more day with her loved ones, even if it comes at an incredible emotional and physical toll. But then again, it takes tremendous courage to stop all treatments and to let the disease run its course, because then gone is any semblance of a safety net as that person invites death to quicken its arrival. Isn’t that person then truly staring death in the face? Isn’t that person then choosing death on her own terms with dignity and grace? Or is that person truly a coward, a horrible wife and mother, too weakened, defeated and exhausted to fight any longer, not even for the faintest promise of one more day with her beloved children, handicapped by an inferior love that does have limits? 

Or maybe the answer to that question is personal to each individual based on a subjective determination as to which path is easier – if there is such a thing – and that true courage goes to the person who takes the path that is more difficult for that person.

For me, the easier path, the path of less resistance is (2). And I suppose that if I take that path, then I am a coward for not choosing to stay on and “fight” like the “warrior” I’m supposed to be. I hate the rhetoric of war that pervades the cancer world, even as someone who once used it liberally. With fighting and war, there is a winner and a loser. Will you judge me then as a loser when I die because I succumbed to my disease? Will you judge me as a loser if I simply choose to stop treatment and to stop actively “fighting”? If you do, so be it.

It seems that I have come to the end of the road of tolerable treatment options and therefore there is a particular urgency in my coming to an answer to this question. I had scans on Monday and received my results yesterday. While my lungs are overall stable (one tumor’s notable shrinkage and another tumor’s growth with all other lung tumors remaining stable), the abdominal and pelvic MRI showed a enlarged peritoneal lymph node as well as a questionable spot around my uterus. The latter may be post-surgical “stuff” but it is impossible for us to know without another surgery. In addition, my CEA continues to rise. Dr. AC is not a fan of the current treatment (Irinotecan and Avastin). Who could blame him? This recycling of prior drugs was really a last ditch effort by me to try the last likely effective treatment available in the hope that their prior use had not as yet de-sensitized my cancer cells to them. Dr. AC believes that continuing with the Irinotecan and Avastin may make us feel good because we are feeling like we are doing “something”, but he doesn’t think that we would actually be doing anything beneficial, at least for not much longer.  There remains two FDA-approved drugs for treating colorectal cancer, one of which is so toxic I swore I would never take it and the other of which is highly unimpressive and tantamount to a waste of time.

He then asked me if I wanted to do something “crazy.” I had to hear what his “crazy” idea was, of course. Because he doesn’t believe that single agent immunotherapy will work with the specifics of my tumor biology (for reasons that are not entirely clear to me), he thinks we need to attempt combined immunotherapy and the drugs he has in mind and has access to are Ipilimumab (brand name: Yervoy) and Nivolumab (brand name: Optivo). Both are FDA-approved drugs used to successfully treat metastatic melanoma. Each drug forces two different receptors on cells that constitute part of our immune system to identify cancer cells as unwanted and thereby allowing the immune system to kill those cells. Dr. AC would also throw in a little radiation therapy (probably directed at that peritoneal lymph node) to trigger an initial immune response and jump start the immune system. This would be done “off-trial”, meaning outside of a clinical trial.

Sounds exciting, huh? Crazy always sounds exciting, but then there are certain complications. First, there’s the matter of getting the drugs for off-label use since the FDA hasn’t approved them for colorectal cancer. Dr. AC seems to have some connections with the pharmaceutical companies though so I think he would succeed, although he himself said it wouldn’t be easy. More concerning to me is that the use of both drugs – known as anti-PD1 and anti-CTL-4 inhibitors, respectively – would preclude me from future clinical trials that include the use of these or any other anti-PD1 and anti-CTL-4 inhibitors. Of course, this is only a concern if I even want to participate in clinical trials.

Last but not least, are clinical trials. Dr. AC said he would probably opt for a clinical trial over “crazy”. He wants whatever trial I do to be one with combination immunotherapy. He says he will talk to his contacts at Memorial Sloan Kettering, Columbia Presbyterian and Johns Hopkins, all places that have strong immunotherapy departments. If trials is the direction I want to go in, I will also have to do the research myself. It’s a daunting task.

Most of the trials available are Phase I trials, trials where the experimental drug is being tested for safety, not effectiveness. That’s a frightening thought isn’t it. I’ve heard people say that the odds of a clinical trial working are 5%. I think it’s much less than that, more like 0.1%.

Josh believes it’s worth “fighting” based on that 0.1%. I don’t agree. Why should I allow myself to be treated like a lab rat, poked and prodded, monitored, scrutinized, suffering who-the-hell-knows what unknown side effects? Why should I diminish the quality of whatever time I have left with my children when the chance of success is so small? Why bother when the end game is the same?

I’m tired. I’m so very, very tired, so tired that I don’t want to do anything at all, not “crazy” stuff or clinical trials. For those of you who don’t live with metastatic cancer who haven’t undergone all the surgeries and treatments, can you possibly understand the depth of my fatigue, physical, emotional and spiritual? I don’t think so. It’s the kind of exhaustion that tests not just any courage I have but also the tremendous love I have for my husband and children.

I’m tired of feeling the strain of living as normal a life as possible under the constant threat of death. Of combating the jealousy and anger upon seeing the grandmother who has the privilege of taking her grandson to school and the envy upon hearing another mother’s carefree laughter with her friends. Of feeling the hatred of the woman who Josh will marry after I am gone, the slut who will live in the home that I designed and have the honor of raising my beautiful children, the bitch who will hang her dresses in my closet the cunt who will steal the life that should have been mine. Of feeling the sadness at the thought of Mia sitting in her weekly violin lesson without me there for her to glance at once in a while for reassurance and encouragement. Of worrying and planning and more worrying and more planning. This is the text of an email that I wrote to Mia’s violin teacher last Friday, a manifestation of my sadness, worry and planning.

***

Hi A,

I think I told you at some point that I have metastatic cancer, incurable and likely terminal. When you told us this week about your violin teacher and how she got you through the first 7 years of your violin life before she died of cancer, it was obvious how much she meant to you and no doubt how much you meant to her. Anyhow, it got me thinking so just bear with me as you read this.

While everyone tells me I need to be positive, I’m a realist and a planner. You are so young so probably some of what I say won’t resonate with you yet, but I will do my best to explain. What makes me the saddest about dying is the thought of Mia learning during her lessons and me not sitting right next to her, watching her. The thought of her performing on a bigger stage and me not being there in the front row to cheer her on breaks my heart into a million little pieces. The image of her practicing by herself without me there to push and yell and demand and hug and teach (not the violin but about life) both worries and saddens me. Who will and can replace me? Who can nurture her musically and otherwise as I can? The answer is no one. No one can possibly love my children as much as I do, not even their father. So the best thing I can do is to line up as many people as I can to be there for them in the different aspects of their lives. That’s what I want to talk to you about.

While Mia’s father is incredibly musically talented, he works a lot and I don’t see him fulfilling the music role left empty by my death. What I’m asking of you is for you –as much as you are able — to take Mia under your wing, to look out for her musically, to guide her and push her when she needs it, to advise her in getting into music programs and, if/when the time comes, finding a new teacher for her.

I know Mia has musical talent, how much I really don’t know. It doesn’t really matter to me how much talent she has. What matters is that she develop what talent she has. I don’t want it to go to waste. Plus, I think she really enjoys playing and likes to perform. She’s one of those people that keeps her feelings to herself which I don’t think is a healthy coping mechanism. It is my hope that music becomes an emotional outlet for her, a way for her to deal with the grief from my loss and the other hardships will inevitably come into her life.

How much you want to and can help Mia is totally of course up to you. I will understand if you can’t do much at all beyond the weekly lessons. But if you want to be more involved in her life and get to know us better, the invitation is always out there. We literally live around the corner from the school. Mia likes you and obviously you are good at relating to little girls.

So thanks for having taught Mia as much as you have (and me). You’ve no idea but the lessons are a highlight of my week. I always wanted a musical education but my parents were too poor to give me one. And thanks for reading all this and putting up with my emotional outburst.

***

And it is because of my jealousy and hate and worry and love that I have threatened Josh with murder from the grave if he were to ever favor future children over our children, whether monetarily or otherwise. I made him promise that he would not move out of this apartment that I have spent so much time, money and energy renovating for my children because the Slutty Second Wife demands so because she wants to banish all traces of me and force my children to forget me. A friend told me about a little boy who lost his mother to cancer at age 1; subsequently, his father remarried and now four years later, that boy calls this woman “Mom”. That story made me cringe and incited this hysteria.

And yet, even as I threaten murder and worry about my children calling another woman “Mom”, I also tell Josh that I want him to find love and happiness again. I tell him it’s okay to wonder about who will marry next, that it’s totally natural to think about a life after me. I tell the children that after I’m gone, Daddy will marry someone else and that it’s okay for them to love her, but just not more than they love me. I don’t want them to feel guilt for loving another woman who acts like their mother and yet I’m terrified of being replaced and, worse yet, forgotten. They deserve a mother who is healthy, a mother who can chase after them, a mother who isn’t constantly bombarded by thoughts of death.

As I write all this, I know how unhinged and schizophrenic I sound. I’m crazy. Josh would tell you I was crazy to begin with and cancer has made me crazier. And poor Josh has to put up with my hysterics, my anger, my sadness, my tears, my darkness. Josh is tired too. He’s tired of living under the black cloud. And out of love for him, I want to die sooner rather than later. I want to set him and the children free. I want him to have a normal, happy life again. And no doubt, his family wants the same for him. I am a burden. I don’t want to be an embarrassment to him at family gatherings, me with my ravaged skin and body – oh poor Josh, they must all think. It will be a lot better for him when my presence is gone and he has someone else with whom to share the rest of his life, someone who will help him heal and forget the pain.

So now you understand with what I am wrestling. Is it more courageous to continue or stop? Is it more loving to leave or stay?  I still don’t know.