Believe

[For once, I have good news. So read on.]

I love Roger Federer. For those of you who don’t know, he is, most would say, the greatest male tennis player of all time (“GOAT”).  I’m more of a Federer fan than I am a tennis fan.  It all started when I met Josh, who was and is a lover of all sports (other than hockey and soccer), but tennis seemed to throw him especially into alternating periods of gut-wrenching anxiety and euphoria, and Roger Federer especially so.  He would watch Wimbledon or the Australian Open matches on tape delay and absolutely despair when Federer dropped a set.  I didn’t know anything about Federer back then and thought Josh was just crazy; how stupid to care so much about two men hitting a tiny ball back and forth.  I’d secretly go on line and find out Federer had won the watch – Josh hates watching sports with anyone who already knows the outcome – and then tell Josh lovingly, “It’s going to be okay, honey.”  Then Federer was in his prime and racking up Grand Slam titles at an astounding pace as he sought to beat Pete Sampras 14 Grand Slam record.  Josh, as do most people, loves to watch dominance, to marvel at human physical excellence, and Roger Federer was a prime example of the incredible feats that the human body is capable of.  My feigned interest in basketball and football disappeared after we got engaged and then married, but my love for Federer persisted. More

Home

Another long silence. I know the silence makes many wonder and worry.  I’m sorry for that.  In this case, in addition to dealing with the usual medical ups and downs (mostly downs at this point), I was simply busy with the holidays, lots of family visiting and staying with us, and throwing myself a 41st birthday party in our newly combined and renovated apartment.  All of these events that carry with them symbolic acts of living and life revolved around not just family and friends, but also this special place I worked so hard to create – home.  Ironically, even my medical developments seemed to resonate with the sense of coming home.

A week after my last blog post, scans showed that I had failed the clinical trial I had been on at Memorial Sloan Kettering (or more accurately, the trial had failed me). They revealed growth in abdominal lymph nodes and two new lesions on my liver (which I suppose is preferable to new lesions in my liver).  The news was, while not unexpected, still upsetting, because I now have involvement in another vital organ, another way by which the cancer could actually kill me.  Will it be my lungs or my liver?  There was some shrinkage and some growth in my lungs, so the thoracic tumors were overall unchanged.  I lost my hair for that awful trial, suffered unbelievable fatigue, underwent that atrocious lung biopsy and for what?  Absolutely nothing!  I was kicked off the trial for progression, although I ran first, so I like to think I kicked it.  More

Fragility

I apologize for my long silence. I’m still alive, although admittedly, at times since my last post, I have felt barely alive and have wondered if this is what dying feels like.  More

Hate

I used to not hate people.  But now I hate people.  Can you guess who I hate the most?

It isn’t the grandmother who has the privilege of taking her grandson to violin lesson, the one I always see when I come out of Mia’s lesson. No doubt, it is a privilege she doesn’t even fully appreciate.

It isn’t even the old lady with a cane who criticized me for taking a seat at the front of the bus reserved for the disabled and therefore depriving a man hobbling down the aisle forced to take another seat a few feet away – I shut her up when I screamed at her that I have Stage IV cancer and yanked at the neck of my t-shirt to show her and everyone else on the bus the unmistakable bump on my chest under which lies my mediport.  I wanted to scream something more about my legal blindness, making me disabled on yet another level and entirely entitled to that seat in ways she could not possibly understand and that she should go fuck herself.  But the presence of my older daughter beside me stopped me.  (My poor children.  They have been so traumatized by me and no doubt will carry with them confusing and humiliating memories of their angry mother acting like a stark raving lunatic on this and many other occasions.  I hope they will understand that the rage was rooted in a deep love for them.)  More

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

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