Now is the Winter of Our Discontent

The winter of 2017/2018 has welcomed a number of storms…. From arctic blasts to bomb cyclones, from nor’easters to those unnamed wind and weather events that took us by surprise. On Long Island, our weather truly does rely on which way the wind blows. The jet stream, gulf stream, and offshore weather patterns dictate what will fall where and when. And if!

We too are finding ourselves unexpectedly being tossed from one infection to another. In many ways, there is no pattern beyond chills and fevers, wheezing and coughing. And always, always the sly announcement; the stumble. The when and why of them is a mystery… a mystery that we need to unravel and eliminate the cause.

Back again are added nebulizing protocols, cough meds, antibiotics and, of course, our beneficial bane, prednisone. What started as an “oh, we’ve just been so busy with the holidays so of course he’s got a little something going on” morphed into, “what the hell, didn’t we just finish with this?”

And so the cycle has been for the last three months. A very short period of feeling better followed by a sudden onset of chills, odd temperatures and horrible breathing. A test… pneumonia; bacterial. Next time, a virus. One lung lobe. The other. Random.

Deciding to get to the bottom of this, tired of seeing the pulmonologist every couple of weeks, we make appointments with all the key gurus: stem cell, pulmo, cardio, immuno. And they in turn, will order tests. The middle to end of March is going to be when we look this head on, put together the puzzle pieces and solve this mystery.

Until the mystery comes and hits us head on before we are ready. We found ourselves yesterday in the ER. Our at-home vitals showed a low O2 level of 79. Temp 94. And shaking chills are all but rattling Rich’s teeth. For the first time in over a year, we flash our red card that fast tracks us to a room in the ER. Unlike the more laid-back evaluations when we’ve come to Emergency in times prior, Rich is immediately surrounded by doctors, nurses, interns, residents, specialists galore… everyone seems to converge on this one room and this one man. Numbers and differential diagnoses fly around the room. Temp begins to rise. Alarm fills the room when his temp is 104.3 as determined by a back-door temp taking. Not Rich’s most comfortable moment. He’s hooked up to supplemental oxygen with a face mask only for it to be swapped out for a BPap for added support as he starts to de-sat. The noise is deafening but he begins to pink up.

Tests… CT scan, x rays, sonograms of the lungs… and at my request, his heart… bloodwork, more bloodwork, nasal swabs. Vitals, always vitals. A few prove informative. Coronavirus… the common cold. And, yes, another pneumonia. Hit with a number of strong antibiotics, prednisone, fluids, oxygen, and two tylenol. Rich starts to stabilize. The long watch begins.

A theory, known to us, is that the repeated, long, and high doses of prednisone, that drug that allows Rich to breathe, has also compromised his immune system and making it impossible to avoid getting a severe reaction to whatever slight bug comes our way. This idea circles through the staff.

Ultimately, we find ourselves now settled in for the night. We are back on the floor where we spent so much time four years ago. The Monti Pavillion’s Leukemia and Lymphoma ward. Down the hall from our room is the door that took us to another door, that took us to the little room in the little hallway where our patient accepted and regrew his own stem cells. Four weeks in the room no larger than the cabins on the Amtrak trains that we love so much. Two rooms from where we sleep tonight is where we spent an overnight for chemo, Rich’s incessant hiccups sounding more and more like a walrus. Around the corner is the room where a post-transplant infection found us. There are changes, but there are also familiar faces and a type of comfort to have the care we have come to know. Lying side by side… me in a vinyl recliner, Rich in his bed, the soft susurrus of the machines keeping track of our patient. Support. The history of our journey through cancer is all here. Reminders of our path surround us. We have come full circle.

When the sun rises today we will meet with our team and perhaps begin the process of taking this mystery apart. The mystery of how to reach our goals, move forward and glory in living. We’ve made plans. Enough. Camus wrote ” In the depths of winter, I finally learned that within me there lay an invincible summer.

And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.”

Let the pushing begin! We are ready for the invincible summer indeed.