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


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