Chaos

So much has happened medically and otherwise since my last post, it is hard for me to know where to begin.  Chaos seems to be the theme of my life.  Sometimes, I really wonder how my mind processes everything that is my crazy, insane existence.

As of my last post, I was trying to decide whether I should spend $27,000 for two treatments of an epigenetic drug called Vidaza, that in a preclinical setting had shown an ability to make colorectal cancer cells more susceptible to immunotherapy. I had already decided that at a minimum I would do what Dr. AC originally presented to me as his “crazy” idea – radiation therapy plus two immunotherapy drugs called nivolimab (“nivo”) and ipilimumab (“ipi”). The radiation would be covered by insurance and the nivo and ipi, while not covered by insurance because they are not FDA-approved for colorectal cancer, were being given to me by their manufacturer, Bristol Myers Squibb. The idea was “crazy” because that therapeutic combination has never been done in a colorectal cancer setting, perhaps any setting. I know of three clinical trials for all solid tumors combining radiation with a drug similar to nivo, but certainly not nivo and ipi. Dr. AC himself has administered radiation plus nivo and radiation plus ipi, but never radiation plus nivo and ipi. I knew from my research and speaking to others who have undergone this type of lower dosed and highly targeted radiation as well as those who had taken the nivo and ipi, alone or in combination, that the treatment would likely be tolerable with manageable side effects. Until that point, my metastases had been exclusively in the lung and subcentimeter, making radiation a much riskier proposition. Any target less than one centimeter is difficult for the radiation oncologist to visualize and radiate and radiating any organ, particularly the lungs, can be dangerous. But then in my June scan, I suddenly had an enlarged and likely cancerous lymph node in my pelvis that was larger than one centimeter; there were no vulnerable organs nearby. At no financial cost to me and with little physical risk, Dr. AC’s “crazy” idea, given the absence of any attractive clinical trials, was a no-brainer for me. More

More Crazy

Thank you for all your comments in response to my last post. No matter how many of you may call me strong and courageous, I need to believe that I am strong and courageous because those traits lie at the very heart of how I view myself and what I like most about myself. Indeed, self-perception matters more to me than what others think of me. (That’s something I wish I could have taught myself much earlier in life.) I need to go to my death liking, even loving, myself, and loving the narrative of my life I have constructed, a narrative that embodies strength and courage. And so, I must choose, what for me and for now is, the path of greater resistance, the one I deem more terrifying, more uncertain, more difficult, for that to me is the definition of strength and courage and what will epitomize most my deep love for my husband and children. Death is a certainty and not even that terrifying a certainty. I’ve seen enough people die from cancer; I have a pretty good idea of how it will progress, how I would die, and with enough narcotics, it shouldn’t be that terrifying at all.  More

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?  More

Chipper

Five weeks ago I had my laparoscopic oophorectomy. Shockingly (or perhaps not so shockingly since the new puppy came into my life four weeks ago), it has taken me this long to write a blog post to inform all you non-Facebook readers how the surgery went and to provide additional information on the findings from the final pathology (which I have not shared broadly with anyone). My left ovary was about two to three centimeters bigger than it should have been. An intraoperative biopsy was performed on the left ovary which confirmed that the growth (which was inside the ovary) was metastatic colon cancer. About one cubic centimeter of that cancerous tissue was immediately handed over to a courier for transport to a laboratory across the river in New Jersey where portions of it were successfully implanted into five mice, a very good number I am told. I believe my mice have been moved since down to Baltimore to the main laboratory. I will know in a couple weeks where the graft of my cancer cells into these mice has taken hold and, if so, they will be cloned for personalized experimentation. While the right ovary looked normal, out of an abundance of caution, it was also removed, together with my fallopian tubes. As the final pathology would later reveal, appearances were deceptive and the right ovary tested positive for metastatic colon cancer as well. All else looked normal in the abdomen, including all organs located therein as well as my peritoneum. Forty milliliters of ascites – fluid – was found, however. The word “ascites” terrifies me; I often hear it associated with end-stage cancer, where hundreds of milliliters can build up in the abdomen as the cancer overruns the body. Fortunately the pathology report declared the ascites to be negative. The surgeon also flooded my abdominal cavity with saline, then withdrew it and had it tested for cancer, something that was also done during my post-HIPEC diagnostic laparoscopy in October 2014. That saline was negative for cancer, as it was in October 2014. If indeed there is no cancer in my abdominal cavity, then it certainly indicates that the HIPEC surgical treatment from March 2014 has withstood the cancer assault well. More

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. More

Living

A week after my last post, I had a chest CT and an abdominal and pelvic MRI. It had been six weeks from my PET scan in early January, which as you may recall, was “mixed” in that there was some growth, some stability and some regressions in the various tumors in my lungs. My oncologist and I had agreed that notwithstanding the growth we would continue on the same treatment of weekly Erbitux infusion and 5-FU push for the time being but that we would rescan in six weeks as opposed to the more conventional three months. The February scans showed essentially stability as compared to the January PET, but what was more alarming to me was that it showed “significant” growth from the October CT and MRI.

The different types of scanning technology offer different pros and cons, which I don’t pretend to fully understand. I generally get PETs once every six to nine months because they can detect disease in the bones as well as metabolic cancer activity in non-solid areas (e.g., the peritoneum) and cover a more expansive area from neck to mid-thigh. While there is a CT scan connected with a PET, the image quality is inferior to an actual CT and MRI.  All this is by way of explaining that comparing a CT/MRI to a prior CT/MRI is more accurate than comparing a PET to a CT/MRI. Therefore, the change from October to February was more relevant (and disturbing) to me. February’s scans showed a couple new tumors and growth of about one to three millimeters in a few other. The MRI also showed an enlarged lymph node in my retro-peritoneum that could be cancerous or benign inflammation – radiologists can’t seem to agree on what it is. As I had suspected, the Erbitux and 5-FU are starting to fail, if not already completely failing. My oncologist and I agreed, however, that we would hold off on changing treatment until I returned from my upcoming vacation, after which I will rescan and we will decide on the next treatment. The last thing I want to deal with on my vacation is unforeseen side effects or complications.

I came home from that appointment, dejected and upset (although not as upset as I have been in the past – you get used to getting bad news after a while). I was lying on the couch when I asked Isabelle to come over and give me a hug. This is the conversation we had: More

Ghosts

I’ve been thinking a lot about ghosts in the last few weeks and more so in the last couple days. It’s part of trying to figure out what happens when we die. And that in turn is a result of not such good scans a few weeks ago and more recently my bout of severe diarrhea that led me to feel like death.

The PET scan was “mixed”, meaning that it showed some growth, some stability and some shrinkage. To me, it proved what my rising CEA had indicated – that the current Erbitux with 5-FU bolus injection is starting to fail. It certainly is starting to fail in those parts of my lungs where there has been growth. My oncologist told me that the “conventional oncological approach to a mixed scan is to continue with the current treatment,” which I understand; milk the drugs for as much as you can before they completely fail. So I agreed to continue but we also agreed that my next scans would be pushed up to six weeks as opposed to the usual three months. My next scan will be next Tuesday, an abdominal and pelvic MRI and a chest CT, starting at 7:45 a.m. I’ll know the results the same day when I see my oncologist so we will then discuss based on those results what awaits me next in the wonderful realm of limited treatment options. More

Pride

My long absence from this blog is partly attributable to the business of my life, i.e., raising two young children, overseeing the looming renovations, spending quality time with my husband and in general taking care of home and hearth. For example, on a recent Thursday, I started my day with dropping the kids off at school; then I went to the Apple Store to make a product return; then I attended a meeting with my architect and designer; then I picked up Isabelle from school and then dropped her off at dance class; then I went to pick up Mia at the bus stop, but then the bus got into a minor accident so I had to go pick her up from the accident site; and then I had to rush back to oversee a kick-off meeting for the renovations with my building’s property manager, super, my contractor and all the subcontractors and my architect. As I have often said, I have no idea how I ever had a paying job. Then, there’s also dealing with the side effects of treatment which has made me need sleep as never before; thus, no more staying up late or getting up in the middle of the night to write. More

A Good Life

I remember when I was an adolescent, my aunt (my mother’s sister) who had just recently immigrated from Vietnam, would take my un-roughened hands in her well-worn ones and say in a slightly wistful tone, “Seng, you have a good life.” To her, it was a statement of fact and perhaps aspirational prophecy. My hands had never known the harshness of working in the fields or making abrasive soaps to sell on the streets or even cooking or doing chores, all things that my aunt and mother had spent most of their lives in Vietnam doing. My youthful hands were pale, clean and smooth, unblemished by sun, heat, grime, labor and the brutal realities of a life that could have been. I once asked my father, during one of our many hours sitting in the car through Los Angeles traffic, why he had left Vietnam. I could not and still cannot fathom circumstances that would make a person so desperate as to leave the country that had been his home since birth and for thirty-something years thereafter on a rickety fishing boat with an unclear destination. His pithy response, “You don’t understand. You eat rice and I ate salt.” My father loves his cryptic Chinese and Vietnamese sayings. No, I guess I will never understand the suffering that compelled my parents to emigrate halfway around the world, risking their lives and their children’s lives for the nebulous promise of a better life, a good life.

I have stared at my hands a lot lately. They are ugly now, the fingers blackened and unnaturally wrinkled, the cuticles overtaking the bottoms of my fingernails, the fingernails themselves oddly pale in comparison to the darkened skin. My hands look strangely tanned (as does the rest of my skin). Fissures that are various shades of pink, red and black (from dried and old blood) adorn the skin right along the edge of my fingernails on the backs of my hands. There are open cuts and the remnants of those open cuts along the creases of my fingers and palms. My ravaged hands are evidence of what the drugs have done to me, symbols of the toll that cancer has taken on my body and my life. I find myself looking enviously at other people’s hands and even my own hands in photos that predate my cancer diagnosis. Seeing those before-cancer photos are especially poignant and even heartbreaking. Every photo, every memory is always now automatically identified by my mind as before or after cancer. Would my aunt today still look at my after-cancer hands and tell me I have a good life? I daresay not. More

Isabelle (Part 2)

Perhaps one of the most frequent questions I get pertaining to my cancerous condition, after “How are you?”, is “How are the girls doing?” As I’ve written before, Josh and I do not subscribe to the belief that our children are fragile flowers and that they will simply wilt under the weight of my incurable and likely terminal illness. We believe in honesty and that hardship, when confronted with love and support, can only engender strength and resilience. And so my children are very aware that I am sick, that I will likely die. 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; that understanding can only come when they experience first-hand the grief of losing their mother. And yet despite their knowledge of my illness, they are amazingly well-adjusted children who are full of joy and love (and well-behaved too, at least for other people if not necessarily for me and Josh all the time; I am told public behavior is what really matters). The school psychologist frequently observes them in the classroom and we chat from time to time; she praises me and Josh for how we have handled the situation and I draw so much reassurance from that praise.

As their mother, I see in so many moments how they are processing the unique reality of their mother being sick and her likely early death. Such moments are truly fascinating and fill me with such pride as I watch them cope with forthrightness, courage and strength.  More

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