Isabelle (Part 1)

After the longest silence on this blog, hello all, finally. How I’ve missed sitting at my computer and allowing my many thoughts to flow out of me as they so have wanted to do, but life and a life that has been dominated by cancer and its darkness have trapped them inside my exhausted mind. So much has happened that I must break this blog post into two parts.  Part 2 will soon follow.

Life consisted primarily of taking care of my children after our Galapagos trip and all that that entails – cooking, cleaning, shopping, preparing for the new school year, fussing over my many new herb, succulent, flowering and carnivorous plants (the objects of a new obsessive yet unexpectedly very cathartic hobby I’ve adopted over the last few months) and, when I could rise above all the cancer crap, playing. There was no camp for the kids this summer since we are trying to save money in light of our significant capital outlay for the purchase of the neighboring apartment and the planned combination. It simply isn’t possible to think when they’re around, never mind write. (Who knew two little girls could fight so viciously and I have no idea how to fairly referee their battles!) The planned combination itself comes with a fair amount of work as the closing is set to occur at the end of this month and the finalized design is to go to the building’s board and the City for approval soon. I’ve been busy thinking about bathroom tiles and flooring, calculating costs and pondering the finer details of the proposed layout. How I wish sometimes, especially when I wallow in the darkness, my life were limited to all this mundaneness, that it were so simple and normal. But alas, for better or worse – I like to believe better – simplicity and normalcy have never been and will never be my destiny.

The cancer part of my life has dominated of late. After my last post, I sank into the darkness of a new abyss, one characterized by the anger, bitterness, hate and paralyzing loneliness I wrote of in my last post. Whereas when I wrote that last post, I was merely in a gray area, the loss of two true friends, friends who I saw from time to time and whom I visited a few weeks before they died from colon cancer, combined with the horrible side effects from my most recent treatment plan pushed me over the edge.
Chris was a kind soul, beloved husband, father, brother, son and friend, chess player and teacher and, least of all, my mentor of sorts on this cancer journey. He watched me from the sidelines, reading my blog entries, listening to my ramblings over lunch or tea, observing how I had grown over the months from the belligerent warrior who was determined to beat this cancer to the more contemplative philosopher who seeks above all else to find meaning, peace and acceptance in a life over which I have little control. Cancer, at least for me, truly is a journey that makes me question and analyze all my beliefs about myself (as in whether I am strong or weak, brave or cowardly), about the existence of a higher being and its role in the affairs of mankind, about commitment and love (as in how far will I go to stay alive for my family), about the meaning of my life and life in general, about death and what awaits. If you are open to these inevitable questions that only something like incurable cancer can force into the forefront of your mind, if you allow yourself the time and patience to mull over these complex, baffling, painful and impossible queries, the journey both will change you (for the better I believe) and make you more of who you have always been.

Chris understood that long before I did. We shared a similar philosophy, heavily influenced by Buddhist thought, but he was wiser than I, and so he was a teacher to me. I went to see him as he was entering hospice care. We sat on his terrace with a view of the Atlantic Ocean and talked of his sadness and expectations, and I marveled at his genuine lack of bitterness, anger and fear; he was grace and dignity personified. As I said my final farewell, knowing that I would never see him again, I hugged him and asked him to wait for me on the other side. He said he would, and that gives me great comfort.

Chris was the first true friend I lost to colon cancer. Yes, I’ve written about others, but they were more in the nature of virtual friends. I didn’t meet them for lunch. I didn’t visit them in their homes.

J was another friend who I would see from time to time, most often in her well-lived Manhattan apartment that bespoke of a fruitful life. I never knew just how famous J was until I saw her obituary written by someone else in the New York Times. You have to be someone relatively important to have your obituary written by a third party and published in the New York Times, no less. But Jane always downplayed her professional success – she was a renowned animator with forty years of prolific work behind her, work that has been displayed at the MoMA and the Met for its innovative significance – and I had absolutely no idea. To each other, we were simply two women, two wives, two mothers, suffering from the same horrible disease, and we commiserated about all that that implied. She found me through my blog and we met to discuss the pros and cons of HIPEC surgery. She was an extremely private person when it came to her cancer and so I was perhaps the only person in the cancer community she befriended and spoke to on a somewhat regular basis and one of the few friends she allowed into her clouded world. She gave my children two books she had written and illustrated and an app on the iPad to help them learn the alphabet. I was shocked by her death, for it happened too quickly for me. I hadn’t foreseen it. At our last meeting in May, she didn’t look like she was going to die so soon. In fact, I told her in an email that her desire to go into hospice seemed premature, an email to which she never replied. I would learn subsequently that she died two weeks later at the end of June, with a disease progression that astounded even her doctors. I didn’t know and so I didn’t have a chance to say goodbye, which I regret deeply.

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 Cetuximab). Given the absence of data and the potential for exclusion from future more promising clinical trials of other drugs, I was not prepared to enter an immunotherapy trial with or without radiation. Erbitux is the drug for which Martha Stewart gave up a few years of her freedom. It is only an option 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 the mutation is actually quite common, affecting about 40-60% of the colorectal cancer population. Erbitux isn’t considered a chemotherapy drug in that it doesn’t attack cancer and other cells directly. Rather, like Avastin, it is known as a targeted therapy; it is an anti-EGFR (Epidermal Growth Factor Receptor) drug, meaning that it blocks the function of EGFRs, which promote the growth of certain types of cells. Colon cancer cells happen to be high in EGFRs. Unfortunately, so are skin cells, which means this class of drugs causes nasty rashes and acne. However, because it is a targeted therapy, it tends to be gentle on the blood counts and platelets. Typically, Erbitux is administered in combination with one of the hard core chemotherapy drugs for colon cancer, Oxaliplatin or Irinotecan, both of which I’ve had. I have heard that Erbitux works as a monotherapy (i.e., as a single agent) only on about 15% of the colon cancer population. Given the greater toxicity of adding Oxaliplatin or Irinotecan, I opted to see if I would fall into that 15%. The goal after all now is controlling the disease while maintaining quality of life and relative health, which requires minimizing toxicity wherever possible.

During our discussion, I told my oncologist, Dr. A.C., in no uncertain terms, “I want to die from the cancer, not from the treatment for the cancer.” After all, I’ve heard of many who have succumbed to the side effects complications of treatment, rather than the cancer itself.

My oncologist responded, “How about you not die at all.” His unexpectedly optimistic statement brought a reluctant smile to my heart. Only from him can I tolerate such optimism. No one else. His comment was so contrary to the dim prognosis he had given me last December that I must believe that 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.” Dr. A.C. responded, “In this case, they’ll just remember you with acne.” Haha! He’s humorously laconic like that.

I also decided, based on my CEA trends, that my previous treatment of Xeloda and Avastin, while not successful in maintaining stability or achieving any shrinkage, did seem to slow growth, and that I wanted to continue with the Xeloda. It was only when I was forced to take a break from the Xeloda because of the cuts on my hands and feet that my CEA would rise significantly. Otherwise, the rises tended to be minor, around one or two points every three weeks. Dr. A.C. agreed with my conclusion. However, I was very concerned about the combined effects of Xeloda and Erbitux on my skin. Dr. A.C. proposed that I go back on 5-FU, the infusion version of Xeloda, which had never resulted in any skin issues for me. Typically, 5-FU is administered over a 48-hour period through a pump that one must carry around every two weeks. 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; 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. This was how 5-FU, a drug that has been around since the 1950s, used to be administered however long ago. That seemed like the perfect solution. I agreed.

I had made my treatment decision 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 said, “Just because it’s no 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 one another 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, that goes beyond the medicine and the science; it should be about each other’s humanity. I need to feel that bond with the doctor who will either save my life or much more likely walk with me towards the end of my life. I need to know that he cares about me as a human being, rather than just one of thousands of patients. He needs to know who I am as a person. And fortunately for me I have found (whether by natural affinity or my own sheer force of will to make Dr. A.C. know and like me) what I wanted, what I deem to be of paramount importance, in Dr. A.C.

But whatever goodness I felt about my treatment decisions was short-lived. Within a weak, my face had developed the expected rash and acne, what my dermatologist called “pustules”. I hate that word; it’s a disgusting sounding word yet it so aptly described the happenings on my face. Clindomyacin (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. True to form, 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 that 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. However, my previous floaters would always go away after a few days, but this one hasn’t. They’ve always been disconcerting to me because they bring to mind fears of worsening eye sight and blindness, which for someone with my eye history is probably among my greatest fears, something that I think I would kill myself over. 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 told my nurse practitioner about the persistent floater and she told me it was standard for a brain MRI to be performed when anyone complained of new vision issues. So I had a brain MRI immediately. My brain appears to be okay, at least for the time being. I then went to my ophthalmologist who proclaimed that everything seems to be okay, even as I wanted to rip my eye out of my face; that’s how annoying this floater is.

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, trying to get it to shrink.  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 cuts 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 the beds of my fingernails. However, the mouth sores win, hands down. They are the worst side effect I have ever experienced since being in treatment. Ever! Worse than any nausea, constipation, diarrhea, neuropathy, anything! And that was 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 mouth washes and remedies to address the mouth sores have been generally ineffective. A new sore would appear on my tongue, gums or on the inside of my lips and cheeks after 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! 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 a bedtime story. Water is barely tolerable. Eating has generally because a tortured and slow process as there is overall stinging everywhere in my mouth when food enters (although I have to admit the coolness and creaminess of ice cream really soothes the raging ongoing fire in my mouth). 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 and for me to find some other less commonly known remedies (which I am now trying with an as yet unclear success rate). It’s incredible to realize how something so seemingly minor as mouth sores can ruin your quality of life.

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 death 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 the eve before 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. And 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 cried for so long in any one stretch. Never have I felt so weakened, destroyed and alone. I seriously considered stopping treatment because I didn’t want my children to remember me as the bitch I was fast becoming. Desperate for something, I posted on the Colon Club forum. Some of you read it, but here it is for those of you who haven’t, so you can understand the depths of my darkness.

For quite awhile now, ever since I posted my last blog post about my sense of loneliness and solitude — I think some of you read it — I haven’t reached out to anyone to talk about what’s going on. I’ve not even been able to find solace in my writing, which has always been my greatest comfort. Ive 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 my left eye out. If you know my history of vision issues (blindness at birth, blah, blah, blah), then maybe you’d 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 4 year old daughter who refused to go to bed. I know it was a reaction to all this cancer crap. My husband told me I had crossed the line. I ended up sobbing hysterically for an hour. 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 – that’s another story for another post. 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 an 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, that 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 dar 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 it felt like. 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 4-year-old voice, “Mommy, why are you lying on the floor?”

The more metaphysical answer was of course impossible for me to say to her, so I gave her a simple answer, “Because Mommy is hot.”

Again 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 find me with so much love and forgiveness for the awful mother I had been and had extended her hand to me to bring me out? I slept between her and Mia on their full size bed the rest of the night, shunning the floor.

[To be continued in Part 2]

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