Paralysis

I often feel like my life is the locus of a vicious battle between Fortune and Misfortune, Life and Death, Good and Evil and I (my body, mind and spirit) am a battered and bruised pawn in their violent games for control of I-known-not-what.  Such thoughts invoke images of the mythical clash between God and the Devil.  I believe, usually, in a non-Judeo-Christian God but I do not believe in devils, the Judeo-Christian kind or otherwise.  And yet, if I examine the trajectory of my life, I don’t know what to believe.  The forces of Evil made me blind at birth in a place and time of desolation and poverty, made my grandmother hate me for that blindness, so much so that she would have me killed by an herbalist.  The forces of Good intervened so that the herbalist refused to do the deed no matter how much gold was offered to him; they took me out of that place of desolation and poverty; they kept me safe and alive on a multi-week voyage to a new future on a rickety fishing boat; they brought me to the greatest country in the world where anything is possible.  The forces of Evil saw to it that my vision would be impaired, however, that no doctor would be able to make me see like everyone else, that I would forever be legally blind.  The forces of Good though had given me innate intelligence, mental fortitude and determination, enough of those intangible qualities to overcome the visual disability and the poverty, the social stigma and the cultural and immigrant biases that would have me believe I could do nothing with my life.  The forces of Good helped me win an enviable education, a highly successful career and a wonderful husband and children.  But the forces of Evil were not done with me yet:  Stage IV cancer at 37 that theoretically was curable at diagnosis, but of course it became incurable and terminal.  And so the battle between Good and Evil continues.

In the unscripted drama of my life and that constant tug between Good and Evil, I should not have been surprised then when things did not go as planned with the trial.  I was to start the trial the day after I wrote my previous blog post, a Wednesday.  I made it through a sleepless night of stress and pain.  But by 11 a.m., I knew something was wrong when treatment had not started yet.  Dr. S, the principal investigator of the trial, who had just cleared me for the trial the day before, walked into my hospital room and asked if my husband was around.  Not a good sign.  Dr. S proceeded to tell me that the Sponsor, the pharmaceutical company sponsoring the trial, had only that morning looked at my scans from the previous week.  They were concerned about the bone met at T1; they were concerned that the expected inflammatory response from the immunotherapy could cause that met to grow so big it would hit my spinal cord and cause paralysis, in which case I would be a quadriplegic for whatever remained of my life.  Dr. S had been sent by the Sponsor to review this risk with me.  The safest course of action would be to radiate the met but then I would have to wait four weeks after finishing radiation treatment to start the trial, and there was no assurance that there would be another spot for me because I would definitely lose this one.  In the meantime, the tumors elsewhere would continue to grow.  I was aware of no other clinical trial that held the same level of promise as this one that I had fought so hard to get into.  I got Josh on the phone and he and I plied Dr. S with questions.  How much of a risk?  Impossible to quantify.  When would the paralysis occur if it occurred?  Immediately.  What if the paralysis didn’t happen immediately; would I be at risk for as long as I was on the trial?  I would be free and clear by the third treatment, which meant three weeks of living with the risk and the fear.  Dr. S very unhelpfully told me it was a difficult decision to make, that he didn’t know what he would do were he I.  There were patients who had responded well to this trial and there were patients who had not responded at all.  In other words, if I did become paralyzed, it might be entirely for naught. More

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In

I’m writing this blog post on my phone, so it will be a short one. I just wanted to let everyone know that after what felt like an eternity, I am IN!  I am about to start the clinical trial of which I wrote in my last post. There were so many hurdles to jump through that I felt like I might fall with every step and then be excluded from this oh-so promising study. The mental anguish and stress resulting therefrom, combined with my increasing pain, was at times almost unbearable. In more than 3.5 years of living with this disease, I have never known such anxiety and stress. I say that without an ounce of exaggeration. 

Signing the consent, which I did on February 10, was not an automatic ticket in (as was the case with my last trial). At the most fundamental level, my cancer tissue had to be shown to express a threshold amount of CEA. One of the trial drugs attaches itself to CEA. So MSK secured tissue from my bilateral oopherectomy at NYU and sent that to the trial’s sponsor for testing.  My blood serum expresses very little CEA (less than 50) compared to many people with CRC (hundreds and thousands).  To address my worry, I started researching the correlation in tissue versus serum expression of CEA, trying to find whatever I could to reassure myself.  The results finally came back last Friday indicating that my tissue was positive for CEA. 

Next were the scans. Last week I had 4 scans in the span of 5 days. That must be some kind of world record. I had my usual chest CT and an abdominal and pelvic MRI. I then had to have a PET as per the requirements of the study. The biopsy would need to be taken from an FDG-positive site, something only a PET could indicate. The scans all showed more progression, which was not surprising based on the increasing pain, but what was surprising and upsetting was a bone met in my thoracic spine, at T1. T1 is close to my spinal cord, which means the cancer is that much closer to my brain. Plus, the trial has an exclusion for any active or untreated metastasis of the central nervous system. Could a met on my vertebra that was penetrating into the outer reaches of the epidural space exclude me?  For 24 hours I agonized. I wanted to scream!  So close and yet so far. Last Friday, my MSK oncologist ordered a thoracic MRI to take a closer look at the bone met. I would not be excluded but they had to make sure the met, when it became inflamed from the immunotherapy, would not hit my spinal cord and cause horrible palm. If it would, I would need radiation immediately and the trial would have to be delayed. Fortunately, the MRI showed that the tumor had to grow by 50% before it would hit my spinal cord, and so would not be an issue. Odd what I feel relieved by these days. 

Yesterday, I underwent the required biopsy. It went as smoothly as I could have wanted (unlike the horrid lung biopsy for the last trial). The tumor I can feel right next to my belly button was a nice juicy and easy target. 

So after another EKG and blood work today and meeting the oncologist in charge of this trial, I made my way over to the hospital to be admitted. I will receive my first infusion tomorrow and will be here for two nights   I expect to be feverish and have pain as my immune system gets revved up. I am told that there are people who have responded really well to this trial — I know some of those people — and people who have not responded. And they have no idea why. I find myself wanting so very much to fall into the first category. I don’t think I’ve ever wanted anything more. I’m excited but scared and cynical and jaded  

In these last few weeks of pain and anguish, I have felt especially alone in this journey, as everyone continues in the normalcy of his or her life.  In my desperate longing to live, I am again humbly asking you to stop in the midst of your enviable normal living and spare me a thought or a prayer. 

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

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