I regret it because she was my friend, but I also regret it because although most normal people are scared to be around dying people, I find that other dying people are not scared. I am not scared. Because J just arrived at my ultimate destination. She was simply on an earlier train, is all. That proximity to death is a powerful draw to a dying person—to be near it, to commune with it, to give and take comfort from it.
Apart from the departure of friends, which can never be mastered, I feel that I have just about otherwise mastered the rhythms of this elaborate game of Clue known as Stage IV disease: You fall in and out of love with doctors. You may even be tempted to cheat on your oncologist, have flings with other major hospitals, only to go back home to your faithful oncologist with your tail between your legs. You will enthusiastically embrace different modalities, only to see them collapse. Different drug combinations or clinical trials will have you convinced that each of them is the one. It is not the one. You will spend time and money on alternative therapies, only to be alternately frustrated and really frustrated. You will, throughout, be a basket case, and you will scream and cry and then you will wipe your face and meet with plumbers and look at samples for the new master bedroom that you’re in charge of, then go have dinner with friends. Because life must be lived!
Nearly two months ago, after the surgeon in Germany told me laser surgery on my lungs was not possible, I made the decision, with the support of my oncologist, to start the drug Erbitux (generically known as the even harder to pronounce cetuximab). Erbitux is the drug for which Martha Stewart gave up a few months of her freedom. It is an option only for patients who do not have the KRAS mutation in their tumors, for in patients with that mutation, it seems to do more harm than good. So I suppose I am lucky to be KRAS wild (i.e., normal), since that mutation is actually quite common, affecting 40 to 60 percent of the colorectal cancer population. Erbitux comes with nasty side effects, including bad rashes and acne. However, because it is a targeted therapy, it tends to be gentle on the blood counts and platelets.
I told Dr. A.C. in no uncertain terms, “I want to die from the cancer, not from the treatment for the cancer.”
He responded, “How about you not die at all?” His unexpectedly optimistic question brought a wary smile to my heart. Only from him can I tolerate such syrupy optimism. No one else. His comment was so contrary to the dim prognosis he had given me last December that I must believe all this immunotherapy buzz that has gained such ferocity in the interim has actually given him a real sense of possibility. And when he believes, I can muster the courage to believe, too, just a little.
I went on to inform Dr. A.C. unequivocally, “I don’t want my children to remember me so sick.” He responded, “In this case, they’ll just remember you with acne.”
I would also be going back on a maintenance course of the chemo drug 5-FU, administered every two weeks over a forty-eight-hour period through a pump that one must carry around. I did not want to wear the pump, in part because it’s annoying but mostly because my children and Josh get upset when they see this obvious sign of my illness. Dr. A.C. then proposed something I’d never heard of (at least not in today’s standard of care); since I would be receiving the Erbitux on a weekly basis, he could give me a quick injection of the 5-FU at each infusion as well. That seemed like the perfect solution. I agreed.
I had made my treatment decisions, and I felt good about them. I’m fortunate in having an oncologist who listens to me and allows me to make my own treatment decisions, as frightening as that can be. He is willing to do what is unusual, to try the unorthodox. As he has said, “Just because it’s not typically done doesn’t mean we can’t do it.” And most of all, I love the fact that we follow each other on Instagram, that we allow each other to see other personal parts of our lives, that we talk about our gardening endeavors and our children. I think that the relationship between a patient with metastatic cancer and his or her oncologist should be a special one, unlike any other patient-doctor relationship. Because oncology is all about where life meets death, the relationship should go beyond the medicine and the science; it should be about our mutual humanity. I need to feel that bond with the doctor who will either save my life or, much more likely, walk with me toward the end of my life.
But whatever goodness I felt about my treatment decisions was short-lived. Within a week, my face had developed the expected rash and acne, what my dermatologist called pustules. It’s a disgusting word, yet it so aptly described what was happening on my face. Clindamycin (a topical cream) and doxycycline (an oral antibiotic) quickly brought the rash and acne under control (although my face still looks flushed all the time). My scalp started to itch and grew sore to the touch, a general precursor to hair loss. Sure enough, I started losing hair a few weeks ago. I’ve begun using hair masques to promote more moisture to my scalp and hair in the hope that doing so will mitigate the hair loss.
About a week after my first Erbitux infusion, I developed a floater in my left eye. Everyone gets floaters from time to time, but because of my previous eye surgeries, I’m more prone to them. My previous floaters would always go away after a few days, but this one didn’t. They’ve always been disconcerting to me because they bring to mind the possibility of worsening eyesight and blindness, which for someone with my history is among the greatest of fears. When I was little, I used to call them flies dancing around my field of vision; I had no other way to tell my mother about the dark spot that was there no matter where I looked and even when I closed my eyes.
I also developed a strange, tender lump near the base of my neck, which Dr. A.C. doesn’t think is a brain met, unless my brain has grown out of my skull, but we have no idea what it is. For now, we simply watch it as I push it around with my fingers. I draw little comfort from the fact that my recent brain MRI showed nothing.
But such vain concerns as acne and hair loss, annoying eye floaters and bizarre lumps on my head, and even the frequent fatigue pale in comparison to the skin breaks on my hands, feet, and lips from the extreme dryness and the mouth sores. Despite frequent applications of lotions and creams, I would wake up with dried blood caked on my lips and in the beds of my fingernails. However, the mouth sores win, hands down. They are the worst side effect I have experienced since being in treatment. Worse than any nausea, constipation, diarrhea, neuropathy, anything! And that is what my medical team has been truly concerned about, for mouth sores can reduce appetite and inhibit eating and the all-important intake of critical nutrients. The existing mouthwashes and remedies to address the mouth sores have been generally ineffective. A new sore would appear on my tongue, gums, or the insides of my lips and cheeks just as one was about to go away. One sore at the back of my tongue caused burning pain in my ear canal every time I ate. I was outraged at the absurdity of mouth pain traveling into my ears! I mean, cancer can kill you, but must it also play such games?
At one point I could barely speak because moving my mouth to talk was too painful, and I told the girls I could not read them bedtime stories. Water is barely tolerable. Eating has generally become a tortured and slow process, as there is stinging everywhere in my mouth when food enters (although I have to admit the coolness and creaminess of ice cream really soothes the raging fire). For someone who loves to cook (and eat) as much as I do, the pain in my mouth has truly been excruciating and borderline intolerable. At my doctor’s insistence and with my happy acquiescence, I skipped treatment over Labor Day week to give my mouth and fingers more time to heal.
I have been reminded how pain can sap your spirit and destroy your will. Perhaps, to my shame, I just don’t have a very high pain tolerance. Sadly, that’s not something I can change. Pain makes me miserable, as it does everyone. But this physical pain, the emotional pain I was already in, exacerbated by the deaths of my friends, and the stresses of having to deal with the other side effects, drove me into the darkest of abysses.
On a Sunday night, on th
e eve of yet another treatment and with my mouth on fire, I couldn’t get Isabelle to go to bed and I lost my shit, as they say. I yelled and screamed at her. Josh told me I had crossed the line. I sat on the couch and cried because of the terrible mother I was becoming, because the pain and misery of everything was turning me into a mother and wife I didn’t want to be. I cried into the wee hours of the night, sitting alone in the dark. Never in my life have I cried with such intensity and despair. Never have I felt so weakened and alone. I seriously considered stopping treatment because I didn’t want my children to remember me this way. Desperate for help, I posted this on the Colon Club forum:
For quite a while now, ever since I last posted about my sense of loneliness and solitude, I haven’t reached out to anyone to talk about what’s going on…I’ve convinced myself that nothing anyone can say can comfort me. I’m filled with so much jealousy, bitterness, and hate, I don’t know what to do to let those feelings go. For months I thought I had found peace, but then the most recent scan results came, and my brief period of stability is over. I don’t feel like my husband can understand, nor my friends. The only people who can understand are those who are in my exact position, but no such person exists.
But tonight, I logged in here after a long absence, looking for some relief. Desperate, I suppose. The Erbitux I’ve been on now for a month is causing my mouth such discomfort. It’s miserable. The rash I can manage, so I won’t even complain about that. I’m also convinced Erbitux has caused this persistent floater in my left eye, which makes me want to rip the eye out of my head. If you know my history of vision issues (blindness at birth, blah, blah, blah), then maybe you’ll understand how this would aggravate me and creates anxiety about whether Erbitux might cause blindness or something. Anyhow, tonight I lost my shit with my four-year-old daughter, who refused to go to bed. I know it was a reaction to all this cancer crap. I don’t want to live like this. I don’t want my children to remember me as a bitch in pain and unhappy. I have my next treatment tomorrow, and I told my husband I want to stop. I would rather die sooner than live like this. I’d rather feel good and be happy and be a good mother. I know I don’t have the courage to actually follow through with that statement, but in time I will.
We recently started going to church because Mia insisted. I’m not a Christian and I never will be, but I go to church to support my husband (who was raised an Episcopalian) and children. I politely refuse communion in lieu of the blessing, but I do listen to the sermon with as open a mind as I can. One sermon in particular by Mother Kate has stayed with me. She spoke of how while we often emphasize the power and goodness of the light, sometimes wonderful things can come out of darkness, too. She held up a plant from her Brooklyn apartment, which, like so many other apartments in the city, is in short supply of natural light. She spoke of how it started as a seed in the dark depth of the soil. This is also true of all human and animal life; we all begin in the dark, do we not?
On that night, I cried and I cried. In what seemed like a symbolic gesture of how low I had gone, I dropped to the floor and cried on the rug, sobbing inconsolably into the pile. And then, in that lonely darkness, my precious Isabelle, the same child I had raged at only hours before, came to me. She found me on the rug and, for many minutes, she sat next to me, putting her hand on my head and saying nothing, as I continued to weep.
Then she asked in her sweet little four-year-old voice, “Mommy, why are you lying on the floor?”
The more metaphorical answer was of course impossible for me to say to her, so I gave her a simple answer: “Because Mommy is hot.”
A comfortable silence fell between us. Then, I said, “Isabelle, you should go back to your bed and go to sleep.”
Her response: “But, Mommy, I want you to come sleep with me. You can sleep on the floor in my room, if you want.”
How could I refuse this child of mine who had ventured into the darkness to extend her hand and offer love and forgiveness to her awful mother? I slept between her and Mia on their full-size bed the rest of the night, shunning the floor.
30
The Gift of Grief
The most frequent question I get, after “How are you?,” is “How are the girls doing?”
My children are very aware that I am sick, that I will likely die before too much more time has passed. Slowly, as they have grown older, they have understood more and more what “death” means, although of course I doubt they have a true understanding of what my death would mean to them emotionally.
My so-smart, almost six-year-old Mia quietly tries to intellectualize all of this, break it down to its component parts, and analyze it. She likes to watch documentaries about wild animals killing each other. She loves to sit on her daddy’s lap and watch shows about airplane crashes in which death is reenacted and then the investigators come in to solve the mystery of why the plane fell out of the sky. She watches forensic autopsy shows about gruesome murders and how science is used to find the murderers. Josh finds such morbid shows captivating, and apparently so does his elder daughter, since she watches them with exceptional focus. Other than the wildlife shows, every time Mia and Josh turn such shows on, Belle protests, screaming, “I don’t wanna watch airplane crash shows!” and runs into another room, frequently dragging me with her.
It was on one such occasion, while father and daughter were watching a show and Josh was explaining to Mia the meaning of “A.D.” as in the year A.D. 1532 and its association with the crucifixion of Jesus, that Mia expressed her desire to go to church, to learn more about Jesus, and said that she believed herself to be a Christian. Since we don’t talk to her much about religion (and indeed Mia had never before been to church), I’m sure she has been having conversations about God and religion at school, likely with one of her classmates who goes to church. But Mia has been speaking of God since she was four, so it wasn’t all that surprising to me when she expressed this desire to learn more about Christianity. I remember a couple of occasions when we would walk by a church soon after I was diagnosed and she would ask me, “What is that building?” or “Who made us, Mommy?”
And then there are the infrequent conversations between her and Belle as they lie in bed:
Belle: God is dead.
Mia: No, he’s not. He’s everywhere. He made us.
So that is why we have started going to church and embracing the community it represents. And I go too, even though I am not Christian, because I want to encourage my family to avail themselves of whatever they can to help them through trying times. I trust that my children are intelligent and discerning and will determine for themselves at a later time, when they have greater maturity and knowledge, whether Christianity or some other religion or belief, if any, is appropriate for them.
Belle, however, does not seem so into the church thing. She likes Sunday school, now that it has restarted, but sitting through the services, however short and catered to children they may be, can be challenging for her.
This was the conversation we had as we were walking to church one day:
Belle (whining): Mommy, why do we have to go to church every day?
Me: We don’t go to church every day. We go only on Sundays.
Belle (defiantly): Friday is my favorite day because on Fridays, I get to eat pizza and I don’t have to go to church!
Even as Isabelle wishes for me to live, I know she is preparing for my death. I think preparation is a good thing, a very good thing for both of my children. I think it will ease the pain and the grief, but more important, it allows them to process that horrible scenario while I’m still here, so I can help them through it; so they can unleash their anger or whatever emotion at me or the world, and then I can soothe them; so they can ask me questions, as they have been doing; so they know from me directly how much I love them and will always love them.
I think of this as the “gift of grief.” We grieve together, now
, and weep for their loss and for my passing, now, so that they are not left to figure it out on their own after I have suddenly vanished. Some mental health professionals recommend sparing small children this part of the dying process, but in my view and for my children, heeding that advice would mean sparing them a level of feeling and affection that is unparalleled, a mother love that will make lasting memories, and that they may never know again in their lives.
Isabelle once asked Josh when they were sitting in the car together, “Can I sit in Mommy’s seat after she dies?” And then one night at bedtime, she wanted to tell the stories, instead of me telling the stories. So she told two stories, with completely contrary themes. The first story was about salvation (possibly mine): “Once upon a time there was a dragon and a princess. The dragon ate the princess. The prince cut a hole in the dragon’s stomach, went inside, and took the princess out. Then, they lived happily ever after.”
And then she told her second story: “Once upon a time there was a frog and a princess. The frog ate the princess. And then the prince found a new princess and they lived happily ever after. The end.”
Isabelle’s behavior is so often uncanny. She exhibits an ageless soul that astounds me time and time again. In the moments when I believe in a God, I feel the power of this child of mine, and I am convinced that she was brought to me to help me deal with my disease. Or perhaps, more accurately, it is when I witness this child’s wisdom, her singular understanding of me, her magic, that I believe in a God, even that God speaks to me through her.
The Unwinding of the Miracle Page 20
