Insanity

For those of you who have read my blog faithfully, you know how brutally honest I strive to be here, how I endeavor to give voice to the most painful and, some might say, the most humiliating and unflattering aspects of myself as I flounder through the journey that is living with cancer – the rage, jealousy, bitterness, terror and sorrow. While I write and share the ugliest parts of this journey in a way that I could never verbalize accurately or completely for my own cathartic reasons (among others), I share also because I know that such brute honesty validates the dark emotions of those who feel as I do as they stumble through their own trials and tribulations, whether they be cancer related or not. And in that validation, you and I, we, regardless of whether we’ve ever met in person, find a connection, a oneness in our suffering that speaks to the universal human experience, which transcends class, race, culture, time and space. I want you all to know that it is to this connection, this sense of oneness, that I cling as the loneliness of this journey threatens to swallow me, especially during these past couple weeks. For the first time in this multi-year struggle with cancer, I find myself ever closer to a lonely insanity. Over the last few weeks, I’ve posted on Facebook pictures of our glorious Sicilian vacation — wandering around a snow-capped volcano, the children dancing and twirling through piazza after piazza, exploring two thousand year-old ruins under the life-giving Mediterranean sun, basking in the fragrance of blooming blood orange trees, gorging on the freshest of gelatos and granitas. Then the weekend after our return, I flew to Los Angeles sans husband and children to join Cousin N in a little adventure of our own during which we saw and came within 5 feet of meeting Oprah. I’ve loved Oprah since I was a kid, watching her show while I did my homework. I posted pictures of me smiling and having fun and living large.

That’s what I’m supposed to do, right? Live as large as I can to show myself and the whole world and the cancer itself (as if it were some sentient being) that it cannot and will never defeat me. Bullshit! I call bullshit on myself and everyone else who constructs those facades.

Those pictures only told half-truths and in that way I was lying; I was being disingenuous. Beneath the sometimes strained smiles and laughter lay the darkness and the ugliness that had come to the forefront of my mind again. Don’t misunderstand me – we had a wonderful time in Sicily. It was the first time that I took possession of this family I had created. Until Sicily, I never felt like Mia and Isabelle were truly my children or that we, with Josh, were a family in our own right. My family was the family into which I was born of course, not these two little people who had their own personalities that I was still trying to understand. And Josh – well, he was my husband, my lover, my best friend, my partner, but not my “family.” It was some time during the many hours we spent in our rented Mercedes station wagon, driving 1300 kilometers around the not-so-small island over 11 days, as we played verbal games, like “I Spy” and “What would you rather have” (as in would you rather have apples or oranges; would you rather live in the city or in the country?), that I realized that those moments were reminiscent of my own memories with my parents, siblings and I making long road trips to San Francisco and Las Vegas as a child. And weren’t these shared memories, together with our joined bloodlines, the heart of what it means to be a family?

And then, I wondered about how many more family vacations we would be able to take, how many more crazy adventures would we have, how many more precious memories would we be able to make? And as I answered those questions based on my fears, I could feel the sadness and the bitterness and jealousy mounting and then the pressure to make as many great memories as I could on this vacation because this vacation might very well be the only vacation with me Mia and Isabelle would ever remember. Therefore, I couldn’t be sad, and I had to push all the cancer stuff out of my mind. But the reality is you can’t ever push the cancer stuff out of your mind, not when you live with metastatic disease, and the harder you try the more present it becomes. Josh felt the same pressures. So we would fight and then cry. The pictures don’t tell that part of the story.

We returned to New York on a Saturday. First thing Monday I had another abdominal and pelvic MRI and chest CT. I had been off treatment for two weeks because neither Dr. AC nor I wanted to deal with the side effects of treatment while I was on vacation so I expected the scans to show growth. My lung nodules grew one to two millimeters in the six weeks since my last scans. But more concerning, my left ovary was enlarged which likely meant that cancer had spread to my ovaries. Dr. AC wanted me to see a gynecological oncologist, Dr. B. As soon as I knew about the enlarged ovary, I started to feel discomfort and pain in the area – the mind can be so powerful. I couldn’t get an appointment with Dr. B for another two weeks. Completely unacceptable. I texted my oncologist, telling him about the growing pain, and asked him to help. He called her and told her she had to move up the appointment and she did. In the meantime, I would go see Oprah in LA and skipped another week of treatment because I was going to continue living large without feeling like crap. At least, that was the goal.

I did see Oprah and had fun with Cousin N, but mostly I worried and stressed and cried, playing out every conceivable scenario in my mind, convinced that disease had spread to my peritoneum, in which case I had only a few months left, that the cancer while I was off treatment was working its way up my spine and into my brain, that I would need gamma knife radiation, and how would I be able to write everything I want to write for my girls if the cancer was in my brain. And on and on the thoughts came, and overran my mind, playing on repeat like some agonizing broken record. Torture that threatened to destroy me. Insanity.

I could feel the animalistic panic rising; I was being forced by the gargoyles atop the towering stone walls to walk ever faster towards my execution, their arrows even more primed, their stone bodies ready any second to spring into life. The pain generated by the enlarged ovary grew worse and worse to the point where for the first time I was truly afraid of the pain that will come as I die. What if the doctors cannot control the pain? What if the narcotics cause hallucinations causing me to try to rip off my skin like a patient in a psychiatric ward? I cannot allow my children to see me like that. More torture that threatened to destroy me. More insanity.

I saw my parents and brother while I was in LA. My father drove me back to their house in Monterey Park, the house where I lay in ignorant agony as the tumor grew to completely obstruct my colon, where the abdominal pain had been so severe that I asked my father to take me to the ER at the local hospital at 4 a.m. the morning of my cousin’s wedding (which had been the very reason for our trip to LA,), I will forever associate that house with my cancer diagnosis. That’s why I hadn’t been back in nearly three years. I just couldn’t reenter that traumatic place. So I sat in my father’s car in the garage long after my parents had gone up, amidst a myriad of dusty old long forgotten boxes that held my high school yearbooks, my speech competition trophies, my childhood and adolescent memories. I called Josh then and sobbed violently to him for a long, long time in perhaps the most crazed and hysterical crying fit I’ve had since my diagnosis. Gone was the persona of my philosophical and sagely self who likes to talk about the evolution of the soul and putting one little life in the context of human history. In those moments and in the many moments since, I’ve been completely self-absorbed in my own life and my own pain. I told Josh as I have often told him that if it weren’t for the girls, him and my promise to him to try to stay alive for as long as possible, I would stop all treatments and let the cancer run its course, living out my days in some other country doing what I have most loved to do all my life, learn a new language. And then when the pain became too much to bear, I would jump off a bridge to put myself out of my own misery in much the same way that we euthanize beloved suffering pets; I would do that kindness to myself. But I have a husband and children I love and so I can’t do that; I’m not supposed to do that.

Then, I sobbed and sobbed and sobbed. I sobbed for my youthful innocence lost, for the destruction of my and Josh’s and Mia’s and Isabelle’s dreams, for the shared familial memories that will never be. In those moments of utter and complete emotional pain, I wanted the irrational and the impossible; I wanted to travel back in time to warn the little girl and the teenager I once was of her fate so she could change it. I wanted the unknowable; I wanted time to be circular rather than linear; I wanted the afterlife to hold the promise of second and third and fourth chances, the opportunity to live this life again and again and again until I could get it just right, until Josh and I could live out all our dreams together. But most of all, I wanted to simply live out this life, also an impossibility, it seems. I never pray for myself because I think to do so is supremely arrogant and selfish. Why would God – if there is indeed a God and if he does in fact intervene in our lives – spare my life and not the life of an innocent child who deserves to live more than I? I would never dare to suggest to an all-mighty being that I am somehow more special than others. But in those desperately painful moments, I prayed to a God I’m not sure even exists that I be spared from this cancer. The pictures don’t portray this part of the story either.

I saw Dr. B this past Monday. After a physical exam, she concluded that my ovary is not cystic and that whatever is growing is doing so from the inside and that it was likely cancer. She said if my metastases were isolated to the ovaries, it would be an easy and obvious choice to do surgery, but since I already had lung metastases, it didn’t make sense to remove the ovary, unless of course I found the pain intolerable, in which case she would happily go in and remove that ovary and probably the other one too. At that point, I didn’t think I had enough pain to justify surgery but even so, after considering her statements for several minutes, I disagreed.

I went to see Dr. AC immediately afterwards. I recounted Dr. B’s conclusions and then said, “I don’t agree. I think this surgery could be an opportunity.”

“Exactly!” he proclaimed before I had a chance to elaborate.

It gratified me greatly to know that Dr. AC and I think similarly. He and I both view the probably cancerous tissue in my ovary – we won’t know for sure until the ovary is removed and the tissue biopsied – to be valuable. It can be used to update the genetic testing that I’ve had done on my primary tumor, the bulk of which still sits frozen at UCLA. Unfortunately, the fruit fly researchers working on creating my fruit fly model can’t use live tissue at this point; I would have preferred they used the newest available tissue. Nor am I willing to engage in any clinical trial that requires live tissue at this stage. I don’t have time to go through that process, assuming a trial were even available at this time; I need to have the surgery as soon as possible so I can be back on treatment that much sooner to slow the growth of the lung nodules. I’ve also decided to spend my own money and have the live cancer cells implanted in immune-suppressed mice. Assuming the implantation is successful, we would then select the drugs to test on my mice to determine whether those drugs might have any cancer-killing effects when directed at my genetically unique cancer. A courier will be waiting outside the operating room to receive the tissue and drive it down to Maryland where the lab and mice are. The scientists would implant the mice that night or early the next morning.

There’s also the possibility that further chemotherapy will have no impact on my ovaries. It is more likely not to work well in that area, just like on the peritoneum. I don’t want the things to get any larger and then cause me additional pain, at which point in order to have surgery, I would have to take at least four weeks off treatment. Surgery seems meant to be since for other reasons I’ve already been off treatment for four weeks. The window of opportunity is open; I must use it. Furthermore, I can’t help but rationally conclude that it’s better to remove whatever cancer one can in order to extend life, particularly when the surgery is low risk and not that invasive. Dr. AC doesn’t seem to think the surgery would extend my life, only in potentially alleviating symptoms later on. I’m not sure I agree as his statement seems counter-intuitive.

Although the window of opportunity is open, it is closing fast. I’m convinced that the cancer will spread to my brain next. While we are dealing with my ovaries, the lung mets are growing. Dr. AC told me that the probability of the cancer going to my brain is very low. My response: “The probably of the cancer going to my ovaries was low. The probability of it skipping my liver and going to my lungs was relatively low. The probability of me even getting colon cancer at age 37 was low. So I don’t fucking care about probabilities. They don’t apply to me. So get the surgery scheduled for me ASAP.” Yes, this is how I sometimes talk to my oncologist, who takes it all in stride.

It took a couple days of me exchanging late night texts with Dr. AC and bugging him on his cell phone because of Dr. B’s nonresponsiveness but we finally scheduled the surgery for Wednesday, the 20th. It will be a laparoscopic bilateral oophorectomy that in the best case scenario will take an hour, assuming minimal scar tissue from prior surgeries. Also depending on the amount of scar tissue, Dr. B will also be able to take a look around and see if I have disease on my peritoneum and then depending on the extent of disease, she will try to remove whatever cancer she sees if she can do so quickly. I will be able to restart treatment a week later.

I made the decision to have surgery within minutes; I had already considered this scenario during the week I waited to see Dr. B. I had already evaluated, processed and plotted this next step. Plus, I’m by nature a quick decision-maker, even when it comes to big life-changing decisions. I’ve always trusted my gut, my instincts, the seeming signals the universe would send to me. It was no different here. Josh was taken aback by the quickness of my decision, unprepared for this sudden new move, as if in some self-protective tactic, he had allowed himself to believe and hope that this enlarged ovary was nothing serious. Another reason I hate hope – it slows down reaction time, it lulls one into complicity; it allows one to live in useless delusion. So, we fought, he arguing that I was being too rash, that any surgery is major, and I arguing that he was constantly living in denial and unprepared to confront reality and that I didn’t have the luxury of time to sit around and deliberate; after all, I was simply following through on my promise to him to do everything I could to stay alive for as long as possible because if it were up to me I wouldn’t do any of this shit. It was a bad fight, which on top of the stresses of trying to schedule the surgery and the ongoing worry of what will be found during surgery, drove me to the brink. More insanity.

Up to now, I’ve not written specifically about mine and Josh’s relationship and how it has weathered the stresses and pressures of cancer. Josh is a much more private person than I and I want to respect his need for privacy (although he very much encourages and supports my writing endeavors). Many, many people ask me how Josh is doing and how we are doing as a couple. I want to answer those questions here because truthfully cancer has an incredible power to destroy relationships and the struggle to keep relationships whole and healthy is particularly arduous and, for some people, impossible. But I also want to answer those questions in a way that remains loyal and fair yet truthful vis-à-vis Josh.

A friend who died within two years of her diagnosis told me she sometimes felt like her husband and she were two ghosts living in the same house, pale shadows of their former happy selves, circling each other, not knowing what to say, disconnected from each other and the rest of the world, so lonely and isolated in their individual suffering. I know what she meant now. Sometimes, it feels like Josh and I are on divergent paths, mine leads toward death and whatever awaits and his towards a new life without me but with the children and a new wife. My greatest fears are a painful death and not doing everything I want to do before I die. His greatest fear is going on without me. I am angry at him for the happy life I know he will rebuild after I am gone. He is angry at me for getting sick and dying. I feel endless guilt for having married him and dooming him to be a widower at such a young age and the children to lives without their mother. He feels endless guilt for not being able to save me. And so in all of our fears, anger, guilt and sadness we feel so alone, so lonely, so impotent in our inability to help each other, even though we know we love each other with a love as powerful as any love sung, written or talked about throughout the annals of history.

I cope by planning. I make lists of all our expenses and how and when they’re paid so when I’m not here Josh knows what to do. I talk to his boss secretly to tell him what I want for Josh’s career. I ask my beloved contractor to do me the favor of helping Josh with things around the apartment. I talk to the administrators and teachers at the girls’ school so they can help with the process of the girls getting into good high schools so that some of the pressure is taken off of Josh. I’m building a beautiful home for him and the girls. I’m getting them a dog. Josh would tell me he doesn’t care about any of these things, that he just wants me. Sadly, there’s really nothing I can do about that.

I cope most of all by talking (and crying) to my friends and family. Talking is pretty easy for me, almost as easy as writing. And of course, I cope by writing. So thank you for being there to listen and to read.

In the midst of all this craziness, I went to get a routine dental cleaning from my periodontist. I had x-rays done because one tooth was feeling a little strange. The x-rays showed that I have five cavities.  Five freaking cavities! I’ve never had so many cavities. It really started to feel like everything was going wrong, one more damn thing to deal with, something else in my body falling apart. Discovering these cavities just about pushed me over the edge. I called my long-time dentist, Dr. D and asked for an emergency appointment. In light of my upcoming surgery, I had to get these cavities dealt with ASAP. I hadn’t seen Dr. D in almost two years because I had been lazy about making the trek to his new office, but he is the best dentist ever, very anal and very enthusiastic about teeth. He wasn’t going to see patients the next day but for me he was going to make an exception. So I went in. He told me based on my x-rays, he thought two of the teeth might need root canals. Root canals. Knowing my bad luck, I was sure I would be scheduling a root canal very soon. He also said that the pattern of decay was consistent with someone who has chronic dry mouth brought on by chemo and other types of medications. The decay in those two teeth proved to be very deep but it had not touched the roots, so no root canals. What a relief. Dr. D. said, “You are very lucky.” I would have laughed if I didn’t have a bunch of dental instruments in my mouth. The notion of me being lucky was ludicrous. And then as I lay there with Dr. D diligently sculpting my new filling like he was Michaelangelo, I realized that I was really lucky in a sense to have him and so many other people in my life who are there to take care of me and my family, from my oncologist to my internist to my construction team to my many friends and family. What did I ever do to deserve such good and kind people from all walks of my life?

Josh isn’t so into talking and sharing as I am and so I don’t think he gives people a chance to offer him support. Typical guy. And sadly, I don’t think caregivers get as much attention or support as cancer patients, even though their suffering is just as great. So for those of you who are Josh’s friends, I ask that you remember him and help him. Send him texts and emails. He may not respond – he’s terrible about responding to people generally – but I know he would really appreciate them.  If you are comfortable, sharing your own trials and tribulations might even ease the unyielding sense of loneliness.

Please keep us in your thoughts and prayers this week as we move forward, truthfully very terrified but nonetheless resolute. We will pull away from the brink of insanity and we will find a new peace.