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.

How do you even begin to process this kind of information, to understand the risk, to assess the situation?  All the words I have cannot begin to express the onslaught of emotions and thoughts crowding my mind, one pushing the other away, each emotion and thought seemingly waging a war for supremacy in my mind.  Images of going home to my children and not being able to feel them with my hands again.  Never being able to tune Mia’s violin.  Never being able to cook again.  Dying immobilized.  I knew paralysis would quicken my death; it would break my will to live; that held a certain appeal, to be put out of this misery sooner.  And yet, what choice did I have?  The alternative – doing nothing essentially – was equally, if not more, frightening.  Going home and allowing the pain to get worse and worse, a constant reminder of the cancer’s sinister spread.

That part of me that is trained as a corporate lawyer and that could still think rationally within the chaos understood that the Sponsor was a corporation trying to cover its ass, that it was afraid of risk and the potential damage to its reputation and shareholder value in the event of my paralysis.  One patient last year died after the tumors in his lungs grew so inflamed that they blocked his airways.  I was quick to point out that that patient’s dose was four times what mine would be.  Dr. S said that they simply didn’t know enough about the correlation between dosing and the inflammatory response.  The Sponsor did not want a repeat of that disastrous occurrence.  Josh thought the Sponsor was overstating the risk.  I tended to agree.

But that belief was not what ultimately swayed me.  Rather, in the minutes I had to make my decision, in that hospital bed, with the doctor waiting in the hallway and Josh rushing to me from his office, I considered the life I had lived until that moment.  The poor, blind girl from Vietnam who somehow did good; the legally blind girl and woman who traveled the world on her own, the person who had always accepted the cards that had been dealt and yet still lived on her terms.  I have always embraced worthwhile risks.  I have always believed that a life worth living is one that includes discomfort and fear and challenge and risk. I always tell my children that anything worth having is hard fought and won, including life itself.  And now, I had to live by my words.  If I was going to die as a quadriplegic, I wanted my children and the world to know that I had died as I had lived, with the courage to assume the most worthwhile risks.  And this trial, given its unusual preliminary success in the clinical setting, as well as the absence of viable alternatives, was a worthwhile risk.

I gestured for Dr. S to come back into the room.  I told him, “We move forward.”  He nodded and said he would go tell the Sponsor.

I was less afraid of the risk of paralysis than I was afraid the Sponsor was going to say no anyhow.  The Sponsor had all the power in this situation with many other patients wanting in on its trial.  There was no particular reason why they would assume the risk that I embodied.  It was obvious to me that the Sponsor and MSK did not agree about the level of risk my bone met represented.  I know Dr. S argued for MSK’s assessment of the risk.  He advocated for me and protected my interests with all the influence and clout that someone of his position and experience holds. And I am so grateful to him.

When he came back into the room, I thought he was going to tell me the Sponsor had said no.  Instead, he told me he was moving me to ICU for the treatment where I would be constantly monitored for paralysis.  I breathed a sigh of relief, both for the fact that we were indeed moving forward and for the close monitoring in the ICU.  I asked him if he thought I was crazy for making this decision.  His response:  “If I thought you were crazy, I wouldn’t let you do it. You’ve made your decision so no more second guessing.  You seem like a very nice person so I’m going to work with you.  I would help you even if you weren’t a nice person but you seem very nice…”  I laughed at the last bit – a nerdy, kind-hearted guy who is doing exactly what he should be doing with his life.  I felt so much better that he would be overseeing my care.

The absence of available ICU beds that day delayed the treatment until the following day, Thursday.  That meant I spent the remainder of Wednesday agonizing, worrying and stressing about paralysis.  I was an emotional wreck, having held it all together just long enough to look sane in front of Dr. S.  When Josh came and then my sister, I just allowed myself to fall apart – to cry, to feel sorry for myself, to bemoan the forces of Evil that once again were trying to destroy me.  How could this be happening?  Others did not have a met on their vertebra.  Others did not have this last minute complication.  Why me?  Why did this have to happen?  Why couldn’t I have just moved forward with the trial like everyone else?  Because I’ve never been like everyone else.  Because the forces of Evil have it in for me.  Josh reminded me of how many people love me and how many people were praying for me.  My sister reminded me of the strong, determined person I have always been, the person who while always having been dogged by misfortune has also always been blessed by fortune, protected almost.  And somehow, with those two reminders, I pulled myself together, gathered whatever courage I could find within, and I got through that night (with the help of my first ever sleeping pill) and the next day’s transfer to ICU and treatment and the two following days in the hospital that brought their own new traumas.

Ironically, I think my mind became paralyzed to some extent as a means of self-preservation.  I moved as if in a dream, in another plane of existence.  I stopped thinking about what would happen if I became paralyzed.  I simply thought about getting through the hours, minutes and seconds of those days and nights.  I did what I was told.  Get in the wheelchair and let them push me down one floor to ICU even though I was perfectly capable of walking.  Climb into the bed and allow them to put cuffs and machines and cords on me to measure my blood  pressure, heart rhythms, temperature and oxygen levels every few minutes.  Adult coloring to keep my mind and hands busy as they prepared the drugs.  Eat to keep up my strength.  Take the steroids to control the expected inflammation.  Then, the drugs started going in at noon that Thursday as I watched some forgettable thing on TV and stared out the glass wall that allowed the medical staff outside my room to constantly see me, as if I were a fish in a little bowl.  About 75% through the second drug, I started feeling cold and then I started shivering violently.  Chills.  The nurses stopped the infusion, gave me Demerol and restarted the infusion 30 minutes later.

The pain started at 11 pm that night – in my abdomen where the tumors are, next to my belly button.  I know there is a tumor there because that was the site of my biopsy only three days prior.  That area had been bothering me for weeks but now it was on fire and hurt more than it had ever before.  And then the pain spread to the left side of my abdomen and then lower into my uterus and pelvis.  It felt like I was in labor but there was no respite in between contractions.  Then, the pain from the diarrhea started.  Then the fevers began.  Then the sore throat appeared and the cough and the watery eyes.  I had been warned by someone who had been on this trial that the pain would be intense and I had heard that another patient had left the trial because she could not tolerate the pain; intellectually knowing that the pain would be bad and actually experiencing the pain were two completely different things.  I begged Rafael, the night nurse, for pain meds.  The studly guy had just come back from a vacation home to Brazil to visit family and enjoy Carnival – I was his first patient since his return and I was jealous of his carefree life.  Rafael gave me Tylenol for the fevers and Oxycodone for the pain.  I waited 30 minutes for the Oxy to kick in but it worked for all of 10 minutes.  I cried and moaned and begged for something else.  It seems that doctors won’t modify the pain plan in the middle of the night.  Every hour, Rafael came to perform a neurological exam to make sure there were no early signs of paralysis, making me lift my feet, push against his hands with my hands and feet, stare into a bright light.  I was alert to every little tingling in my legs and arms.  I couldn’t sleep because of the pain but even if there had been no pain, I would have been too terrified to sleep for fear of waking up a quadriplegic.  I lay there looking sightlessly out the glass wall lit by the hallway’s florescent lights, wondering if rather than an inflammatory response from the immunotherapy, my tumors had decided to grow like wildfire and I was dying.  And if this was just the expected inflammatory response, I wondered if this was a foreshadowing of what was to come as I died, if this was the kind of pain that awaited.  I lay there alone, lonely and afraid, yet grateful that no one other than Rafael was there to see my wretched state; I would have scared Josh and my sister with my crying and moaning.  I would have scared them for I knew I was more than a step closer to death, that I was experiencing the kind of pain that can only be associated with dying, with the body preparing to shut itself down.

With the early morning light came an end to the pain and blessed sleep, however brief.  My abdomen was sore, like I was recovering from abdominal surgery, but it no longer hurt unless I moved.  They offered me morphine through a pump.  Sure, I said, but I didn’t need it now.  I slept for most of the morning, only interrupted by the hourly neurological exams.  By early afternoon, they announced that I was no longer in danger of paralysis and that I was being moved out of ICU.  Relief!

I was completely exhausted on Friday but now the staff had to help me get the fevers under control..  After being moved back into a regular room, my oxygen level dropped to 92% — normal is 95% or higher with mine typically ranging from 97% to 100%.  A team of doctors came in wanting to know if I was feeling any shortness of breath.  I tried to breathe as deeply as I could as doctor after doctor listened to my lungs and put the plastic clip on my finger to measure  my oxygen saturation levels.  I thought I would pass out from breathing too much.  Someone came to take a chest x-ray to rule out pneumonia.  Then, I was wheeled down to get a chest CT to make sure I did not have a pulmonary embolism, a lung clot.  The images showed inflamed lung tumors but no pneumonia and no pulmonary embolisms.  My fevers were causing my decreased oxygen levels, I was told.

Saturday came with the fevers under generally good control but the diarrhea was still a problem.  But by late afternoon, I was told I could go home.  Really?  I did not feel well at all, but since paralysis and the fevers were no longer an issue, they felt I could manage all the other side effects at home.  Josh was at home with the girls, so I ordered an Uber for the ride back to Brooklyn.  I stepped outside, the first time I had been outside in four days.  It had gotten cold again after days of relative warmth.  The world had continued spinning while I was in the hospital.  As the car sped down the FDR, I felt strangely out of place, shell shocked, like I had seen the ugliest of wars, like I had come to know so intimately my own physical fragility, like I had felt death’s kiss on my cheek.  I had been indelibly changed by the last four days and I wasn’t sure how I was going to go back to the world of the living, to unsee the things I had seen and unfeel the things I had felt.. That night, I climbed into bed with my sweet Isabelle after she had fallen asleep and grasped her face with my hands, touching and feeling her soft baby skin with my roughened fingers.  I sobbed out of relief for what could have been and fear for what might still be and sadness for what will certainly be.

It has been four weeks since my hospitalization.  I have had three more treatments since then, all outpatient as the initial danger was deemed to have passed.  The second treatment brought on even more severe chills that were frightening and exhausting.  The fevers, aches, coughs, headaches, diarrhea, bloodshot and watery eyes, itchy palms and feet, pins and needle tingling in my hands and feet, and fatigue have taken weeks to abate.  The fatigue is still there and I still can’t taste anything.  The intense pain of the first treatment has not returned.  As expected, each treatment has been a little easier to handle.  Whether the treatment is working I have no idea.  I suspect it’s working in some places and not working in other places.  Many have asked me how long the treatments go on for, as if there is some end to “this” other than blessed death.  I do these weekly infusions until the drugs are proven through imaging not to be working.  I have a PET scan next Tuesday in advance of another biopsy (another requirement of the trial), so I will know more then.  I still don’t feel like myself, like my head is buried in the clouds.  I feel a certain indifference and apathy to all the mundaneness around me, like a part of me is already moving on.  I can’t decide if it’s the fatigue, another side effect of the treatment, a brain tumor or the after effects of the traumatic hospital experience.

As irrational as it may sound (although it seems very rational to me at times), I believe that I was meant to die a long time ago, that mine was a life that was never meant to be.  And yet, somehow through no action of mine, I have lived and I don’t know why.  Many say that they never stop to ask “Why me?”  Those people have far greater acceptance and faith than I for I have asked “Why me?” all my life.  I seek truth, answers, meaning, purpose, wisdom.  Of death, I yearn for all those things, such that once I leave this body I will know the meaning of existence, the purpose of my life, the reason for human suffering, whether there is a beginning or end to time and the universe.  Until then, I am left with the never ending questions, with the unyielding sense that I am the innocent victim of this tug-of-war between Good and Evil, with the exhaustion of living a life of constantly trying to escape misfortune and death.  Death always wins.  Death comes for us all.  It’s just that most people don’t knowingly dance with it for as long as I have.  I am so very tired.  I find myself eagerly awaiting death, even as I take a life sustaining breath and even as I long to hug and kiss my children for decades to come.  I want the freedom that Death represents.  I want Josh’s suffering because of me to end.  I want my suffering to end.   And yet somehow, I will get up tomorrow to get the kids ready for school and kiss my husband as I wish him a good day and then I will go in for another treatment in the hope of staving off Death for a little bit longer and I will come home and sleep and then I will get up and clean the house and make Mia practice violin and Belle practice piano and figure out summer camp plans for the girls and plan a summer vacation for my family on which I may or may not be able to go.  The constant push and pull between Life and Death continues.

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14 Comments (+add yours?)

  1. Cristina
    Apr 06, 2017 @ 12:29:54

    ❤️ You are in my thoughts. Always wishing you the best.

    Reply

  2. Jeffrey Jordan
    Apr 06, 2017 @ 13:28:26

    Your reports always leave me short of breath and appreciating life. Continued prayers that good wins over evil here.

    Reply

  3. Heather
    Apr 06, 2017 @ 15:45:16

    As always raw and beautiful. So many things I understand and relate to. You are a fighter and your family will always know you gave your all to be with them. Love your posts!

    Reply

  4. Jeanine
    Apr 06, 2017 @ 16:05:43

    My heart breaks for you and I don’t even know you. I pray that this trial heals you. You are truly remarkable, Julie. Xoxo

    Reply

  5. Joan Bardee
    Apr 06, 2017 @ 17:40:46

    I’m so sorry that you and your family are going through this. It isn’t fair. I hope so badly that the trial is a success.

    Reply

  6. Mary King
    Apr 06, 2017 @ 18:45:22

    God Bless You and many prayers that this will bring you to a new season of peace and comfort and precious time with your family.

    Reply

  7. Barbara Gettelman
    Apr 06, 2017 @ 22:07:24

    Your last paragraph is the most stunningly honest piece I have ever read. You have reached the core of your being and you are brave enough to share it (someday) with your girls. They will be able to appreciate your journey, your honesty, your despair, your grief and your tremendous love for them. You are someone I have never met but will never forget.

    Reply

  8. Patricia Silbiger
    Apr 07, 2017 @ 10:07:28

    You have great strength Julie. You are a fighter. You are in my prayers every day. I hope this trial works for you. Xo

    Reply

  9. Tyler Burton
    Apr 07, 2017 @ 10:23:37

    Warrior

    Reply

  10. Eric
    Apr 07, 2017 @ 13:38:13

    From a fellow stage IV colon cancer patient, keep fighting! And if possible, try to raise your Vitamin D levels which may help.

    Reply

  11. Barbara Gettelman
    Apr 07, 2017 @ 23:21:07

    I hope you have had some relief. I cannot stop thinking about you and your post. Every word is torn from you. This is no gentle life that you’ve embraced. But you have given the most precious gift to your family. You are tired, I’m sure. But be proud of your strength through this. Spend a little time every day marveling at YOURSELF, that you inhabit this failing body with incredible dignity. With monumental resolve. With (damaged) eyes wide open. You are just the definition of a warrior. You can decide when to put down your sword.

    Reply

  12. DonnaW
    Apr 11, 2017 @ 12:46:51

    You have the fortitude to survive, Julie. Please know that you are an asset to humanity. I don’t know you personally, but your descriptions of living with metastatic colon cancer is so raw and precise. Reading about your suffering breaks my heart. I hope for less pain for you and that this trial gives you stability.

    Reply

  13. Won
    Apr 18, 2017 @ 10:14:32

    Thank you for your blog entry. You are amazing

    Reply

  14. Laura
    Apr 23, 2017 @ 18:46:11

    Julie,
    I hope the treatment is going well. I ‘ve been following your journey since i saw your posts on the colon forum. You are in my thoughts. Your courage inspires me to fight and live.
    Wishing you strength!
    Big hug
    Laura

    Reply

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