Sunday, July 26, 2015

The Worst Day Ever, Part 2

As happened many, many times during my stay at NIH, a friend would text at just the moment when I needed him or her the most.  When the flock of doctors had left the room after delivering the news about the Rh-positive platelets, I received a text from a friend:  "How are you doing today?"  I replied something like, "Not good.  Please pray." but gave no details.  There was too much to explain.

Someone knocked on the door, calling, "Nutrition!", and entered with a lunch tray.  I was in no mood for lunch.  Just then, a visitor entered the room.  I recognized her as the (Roman Catholic) Eucharistic Minister.  She was filling in for the Wandering Priest, she said, because he wouldn't be at the hospital that day.

When the woman looked at me, it was not with pity, or concern, but profound compassion.  She apologized for interrupting my lunch, and asked if she could sit down.

She sat across from me, in a chair facing mine next to the window.  The tray-table separated us.  I did not touch the food, but instead spent the next hour or so telling her the story--at her request--of how I came to be at the NIH.  I started with stories of my kids, and about the sorts of things we did as a family--our walks to Mass, and how the boys loved rainy days the most because on those days we all got to carry umbrellas.  I showed her a picture on my phone of my three little boys and their umbrellas, the middle boy's head completely hidden by his blue umbrella. I shared how my diagnosis came about, and what I experienced the night before my initial surgery:

When meditating on what a diagnosis of cancer might mean, I had the overwhelming sense that I would be protected from fear, no matter where the path ahead took me.

I went on to explain that I saw myself talking to Mary, the Mother of Jesus. In a way that I can't explain, I became acutely aware that I would suffer. I felt like I was being told (but I did not hear an audible voice) that what I would endure was absolutely necessary, and it could not be avoided. In some way, I knew that no one could stand in my place--for some reason, it had to be me. I was the one who had to undergo whatever was to come. I was not promised healing, but I mentally accepted whatever lay ahead. I had the overwhelming sense that good was going to come from my disease. I did not know if the "good" would lead to a cure for me, but I trusted that some plan was underway and that my job was to cooperate. I was at peace with it. All worry drained away.

The Eucharistic Minister sat and listened intently.  I asked her if she knew who St. Louis de Montfort was.  She did.  I explained that after the birth of my fifth child, in 2009, I had followed St. Louis' formula for Total Consecration.  She was familiar with the devotion.  I explained how I had had to reconcile myself to the fact that God's plan might include someone else raising my children instead of me. I told her that the only way I was able to accept this idea was because I believe with everything that I am, that God loves my children even more than I do. I knew that cancer might take my life. Thinking of my kids missing me was almost too much to bear. I had to surrender to God's Will. I had to trust like never before. Whatever the outcome, God could and would use it for His glory. He would not abandon my children..."my children" have in truth been His all along. In fact, even with all of the turmoil, set-backs, and pain that led to me getting to NIH (posts re: failed needle biopsy, here and here which is my new standard for how much something can possibly hurt),  I could honestly say, I was protected from fear. Fear gets in the way of faith. I learned this lesson well. I knew, too, that my time at NIH might not lead to a cure for me, but I firmly believed (and do believe) that participating in the TIL clinical trial was what I was meant to do.

We were both in quiet tears.

Talking with this visitor was just what I needed, but now it was my turn to listen.  She shared with me the story of her husband's cancer diagnosis.  He had had a glioblastoma, cancer in the brain.  She told me of his willingness to undergo a clinical trial some fifteen years prior, at the very hospital where we both now sat.  The group of patients that underwent that trial, she said, were among the first to receive IL-2.  Her husband's side-effects from the substance--the same one I wrote about here and here, and which caused me no side-effects--had cost her husband his life.  His brain had swelled uncontrollably from the treatment, and he died.

I don't know how long we talked. When we finished, we assured each other of our prayers, and gave each other permission to re-tell our stories. She shared the Eucharist with me, and we prayed together.

I felt some relief then, but was still restless and annoyed about the Rh-positive platelets.  I was to receive another transfusion of platelets that day, and though better, my mood was still one of agitation and loneliness.

My fellow strode in then, as he always did, to check on me before the rest of the doctors came door-to-door on their afternoon rounds.  He knew that it was a Very Bad Day for me, and he attempted to lift my spirits in what I considered at the time a most uninspired way.

him:  I'm gonna see if Recreational Therapy can come up here to you.

me:  You're sentencing me to weave pot-holders?!  < scoff >

fellow:  I am going to speak to the infusion specialist about what happened.  I will let you know what he says.

He left then, and returned later on rounds with the attending physician and several others.  The attending physician asked where my husband was, and "Couldn't we get a visit from your kids arranged?"

I explained that my husband's current view of the children was that they are, "walking petri dishes of germs," and that he had forbidden any visitors, including himself, while I was neutropenic.

The doctors filtered out as they always did. The infectious disease specialist hung back a bit, offering a comment, sort of over his shoulder as he walked out, "I can't disagree with your husband."

I was left alone again, to stare out my window-without-a-view. Depression began to settle like an angry fog.

Sometime that afternoon, the fellow returned, swooping in triumphantly with a six-page document, freshly printed and stapled. "Here," he encouraged, "read this. We'll talk about it later. I have my own copy." He explained that he had mentioned to the infusion specialist that he "had this patient who wants to know everything..." The specialist then found an article that had been published in the British Journal of Haematology titled, "Low frequency of anti-D alloimmunization following D+ platelet transfusion:  the Anti-D Alloimmunization after D-incompatible Platelet Transfusions (ADAPT) study." He made the fellow a copy, and one for me, too. "She may find this of interest..."

Well then. This was a far cry from weaving pot-holders! I was immediately shaken from my loneliness and gloom. I had been given a project to tackle! Who knew if I would be able to understand a word of it; the fact that these two gentlemen had taken the time to find that study to ease my mind was almost incredible to me. Any doubts that I may have had about the care I was receiving had vanished in that moment.

My doctor returned at the end of his work-day and went over the study step-by-step with me. Though I was at diminished capacity, due to lack of sleep, I was able to keep up, contribute, and agree that the odds of me becoming sensitized from the transfusions I received were very slight indeed, if the medical journal article was accurate.

The Worst Day Ever was over. When I awoke the next morning, the dark cloud was gone. Confidence in my medical team, and in the institution of NIH itself was restored by that one act of perception and kindness on the part of my immunotherapy fellow. I will never forget it.

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