Saturday, July 25, 2015

The Worst Day Ever, Part 1

On Day 7, despite a transfusion of platelets on both Day 3 and Day 6, my counts were still not recovering.  I developed an itchy, bright red rash that covered way more of my body than I care to remember.  Some docs thought it might be petechiae-gone-crazy, others thought perhaps "heat rash".  All seemed content to blame the platelet infusions.  I was given a cooling sort of lotion, which relieved the itch somewhat.  Later, they prescribed nystatin powder.  This seemed to help even more than the lotion had.  (Petechiae looks like pin-prick-sized red dots all over the skin, but what I had was a solid, deep coloring that appeared in wide swaths over various parts of my body.)

More fun, I developed an incredibly dark, purple-y bruise on my right upper arm.  This hid just below the sleeve of my gown, and happened to be located on the arm most-chosen for blood-pressure measurements and neupogen shots.  Nurses routinely gasped when they lifted the sleeve of the gown and found themselves staring at such a battered hunk of flesh.

Nurse duJour:  Where'd that come from?

Me:  Do you know < insert name of favorite nurse >?

N dJ:  Yes...why?

Me:  She hit me!


I still don't know how I got that bruise (and it remains on my arm to this day, though it is fading).  Of course, no NIH nurse would ever punch a patient!  They all went "above and beyond" in their care for me.  As did the doctors.  Despite what I'm about to tell you next.

Up until Day 8 post-cells, I would wake from my two or maybe three hours of nightly sleep with either a song in my head, or what seemed like someone happily shouting (why shouting, I don't know) a prayer from the rosary (most often this one: "Hail Holy Queen...").  On Day 8 though, I woke to utter silence.  Something seemed "off".  I felt incredibly lonely.  It was Day 8 post-cells, but Day 19 in the hospital with no sign of when my bone-marrow might bounce back.  Though the previous day's ANC (absolute neutrophil count) came in at a (not!) whopping "10", I was told not to get my hopes up; it could mean nothing.

It was 6:00 AM.  I slogged out of bed, over to the chair that waited by the window.  I faced toward the only sliver of sky that I could see from my room, up above the glass walkways that connected the upper floors of two wings of the building.  As I prayed a rosary, I noticed my fellow walking through the glass-encased walkway towards the 3NW wing.  I knew that in a matter of minutes he would stride into the room without knocking, as he did every morning.  I would have plenty of time to finish the rosary before he arrived.  I offered prayers for him, and for the rest of the staff, too.

He came in without greeting me, and sat on the edge of the bed.  He leaned forward slightly, his hands folded in front of him, his expression serious.  He looked past me, out the window.

him:  I have something to tell you

me:  m'kay

him:  We have been giving you Rh-positive platelets.

me, horrified:  WHAT?!?  What are you trying to do kill me?

him:  < silence ...then > ...we're discussing it.  We are going to talk about it at rounds.  I think it may only impact you if you are intending to have more children.  We will talk about it at rounds.  I will be back soon.

me, calmer:  OK.  < long pause > I woke up so homesick. <fighting tears>  Do you have anything that can take homesickness away?  (Of course, I knew that he didn't.)

him:  < long pause > I wish I did.  I will be back for rounds soon.

He left.  Silent tears streamed down my face.  I stared out the window, at the tiny sliver of sky that wasn't blocked by the brick walls of the building.  I prayed that I would regain my composure as I faced what the flock of doctors would tell me.

My Rh-negative status was linked to some powerful, tragic memories which came flooding into my mind as I waited for the doctors' return.

What did it mean to be Rh-negative, and receive Rh-positive platelets?  How could platelets be Rh-positive?  I had no idea.  Could it be the cause of the horrible rash?... A more horrifying thought: Would it impact my immune system? Would it affect the TIL treatment?

I was ignorant, and so terribly tired.

A few minutes later a flock of white-coated doctors entered my room.  The attending physician took the floor, explaining what the fellow had just covered.  He then referred to his peer, who he said, was more experienced with this question.  That doctor encouraged me to get a rhoGAM shot.

I had questions.  How would rhoGAM affect me, given the fact that I had no immune system to speak of?  What were the ramifications if I did not get the rhoGAM?  Was it too late already?--the first platelet infusion was five days earlier.  With all of the pharmaceuticals coursing through my system already, would it be wise to add one more?...  How dangerous is this situation, and did you know this happened before today?  Why wasn't I informed ahead of time that this was a possibility...

What I could not verbalize at the time, my chief concern, was this: What other mistakes might happen?

I found it impossible to form the words to express all of the ideas swirling in my mind.  I began to doubt everything the doctors said.  Prior to this, I had been more than content, I had been eager to trust these brilliant minds.  Yet at that moment, I wanted to banish all of them from the room.  I wanted to throw things at the door behind them as they left.  I was angry about...what?  I was sick of feeling sick.  I felt out-numbered, ignorant, and utterly helpless. I was alone in a room crowded with strangers, all staring at me. Nobody knew what to say, least of all me.

Someone commented that my platelets were so low, that it would've been more dangerous to not give platelets.  "You needed platelets," he stated as a matter-of-fact.  Maybe I did need the platelets, but did you know you were giving me Rh-negative platelets?  Is something wrong with the process?!  Shouldn't I have been informed before it happened?  It was too much.  I had no strength to argue, or to even, I think, articulate my concerns effectively.  I was too weak, and too sleep-deprived.  I submitted to the rhoGAM shot.  The shot itself was no big deal--my issue was with the lack of information about the platelets.  I'm not sure I got my point across. The doctors filtered out of my room--all except one.

The pharmacy specialist held back.  He explained that NIH has a world-class blood bank, and even they run low on Rh-negative platelets.  He went on to inform me that Rh-positive platelets are often given to Rh-negative patients, to no ill-effect.  "Red cells are found in platelets, but in such low numbers that they most-often do no harm."  I mentioned that I had already had two infusions, and they spoke of a third one...  "Not to worry," he assured me. 

I wanted to believe him.  I needed more advice.  He told me his name, and said he'd be happy to discuss any concerns or questions "any time".  He was friendly, and confident.  He seemed to believe what he was telling me, but I was not so sure.

As soon as he left, I texted my friend-doctor back at home.  His comments confirmed what the pharmacy tech had said.  It wasn't enough.  I next contacted an online friend who trains nurses about all things Blood.  She, like my other friend, assured me that I need not be overly concerned.

I was still terribly homesick.  A friend texted, "How are you?" and I texted back something like, "Very rough day, please pray."  A few minutes later, something happened that would change everything.

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