Pain

For a week, I’ve been trying to write but nothing comes out.  Nothing coherent.  Nothing good.  I am in chaos, and so there can be no good writing under the circumstances.  I decided I should just write to provide you all with an update before more time passes. More

Action

A couple weeks ago, when my children were not eating yet another one of my homemade dinners, I started lecturing them about how actions speak louder than words, that I hoped they would always follow through with acts of meaning and substance.  As they sat sullenly over their bowls of Japanese beef curry stew and rice, I told them about how my parents never told me or my siblings that they loved us; they still don’t.  But we always knew that they loved us.  Always.  We knew because they worked long hours, six days a week, to make ends meet.  We knew because they were always there when they weren’t working.  We knew because they always cooked the most delicious meals for us.  I told my children about how food, the making of it, the enjoying of it, is often an expression of devotion and love, that I cooked these nice meals for them because I loved them and wanted them to eat healthily and to grow.  So, how did they think I felt when they didn’t eat my food.  Sweet Isabelle eagerly raised her hand like she was in the classroom.  “Yes, Isabelle,” I said.  “Bad?” she replied, somewhere between a statement and a question.  Mia continued to sit, seemingly ignoring the whole exchange and me especially, no doubt practicing for her preteen and teen years.  Despite my attempt at inciting guilt for rejecting my act of love, the kids didn’t touch their dinner that night.

And yet my words seemed to have seeped into their brains, at least Mia’s.  Mia made me a card yesterday for Mother’s Day that read, in part, “Thank you for taking such good care of us and for loving with action.”  Yes!!!!  I was so happy.  It was the best gift I could have possibly received for Mother’s Day.  That and the continental breakfast of a smushed toasted croissant, unwashed raspberries arranged in a triangle and a hard boiled egg that had been in the fridge for days.  The best Mother’s Day yet.

On this day after Mother’s Day, I got to the hospital again, this time for radiation simulation.  I am thinking again about the idea of love with action, about how in truth this struggle to survive and live well these almost four years is a tremendous act of love.  Through the pain and suffering, exhaustion and fear of more pain and suffering, I have lived not because I am afraid of dying, but because I am expressing my love.  Love for my children.  Love for my husband.  Love for my parents, siblings, family, friends.  Love for life itself.  As trite as it may sound, love is a powerful force that can motivate through fear, depression and paralysis as nothing else can.  It is what has kept me going all these years.

I find myself afraid again today.  The period of breathing more freely was short-lived.  More

Breath

I feel like I can take a breath now, at least for another few days. I have room to twist and move under the constant threat of Death.  I can conceive of living beyond June.  This has been true for two weeks, since I received the results of my PET scan, performed five weeks after my first infusion of my current trial protocol.  I guess the forces of Fortune, Life and Good won that particular mini-battle over the Forces of Misfortune, Death and Evil.  That’s right – I actually have good news – good scan results to be specific – for a change.  Are you shocked?  I certainly was.  I don’t remember the last time I had good scan results.  I certainly haven’t had shrinkage in any scan EVER (I disregard one and two millimeter reductions as within the margin of error and, to me, such small reductions are for all intents and purposes, considered stable disease).

Before I get carried away and get your hopes up, technically, the scans were “mixed”, meaning there were areas of growth as well as areas of shrinkage. When Dr. S, tall and gangly in all his academic nerdiness and seriousness, came in and without any agonizing prelude told me my scans were “mixed”, I took that to mean essentially stability.  In the one or two times I’ve had “mixed” scan results, there was a millimeter of shrinkage here and a millimeter of increase here, nothing terribly exciting and essentially neutral.  In truth, neutrality was what Josh and I were thinking would be the best we could hope for.  I’ve come to reluctantly accept that a stable scan is a “good” scan.  But as Dr. S began to elaborate – a lung met previously measuring 1.0 cm x 1.2 cm, is now 0.5 cm x 0.5 cm, one of the two liver lesions has completely resolved and the other one had nearly completely resolved – I interrupted him.  “But these are dramatic reductions!”  There were other dramatic reductions in tumor size and activity level, some by 30% and more.  But then there were also increases, some of them also be 30% and more, but it certainly didn’t seem like there were overall more increases than decreases..  “What do you make of these increases?” I asked Dr. S.  He said, he didn’t know what to make of the increases, that they could be inflamed tumors (a natural response to the immunotherapy), that it was still early days in the trial, and that we should be encouraged that my tumors had indeed responded to the protocol.  “So, this is good?” I prompted Dr. S, afraid to believe.  “Yes, these are really good scan results,” and there was the smile from Dr. S, the barely contained excitement bubbling just underneath the geeky exterior of this consummate scientist who had no doubt seen so much disappointment and yet still found the optimism to go on. More

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

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

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