The past few days since the last post have largely passed for Viral in a fever-state. For the first couple of days his temperature hovered around 104. Today it’s been close to 103 for much of the day. He has had to recede into some place deep inside. There has hardly been any energy for eating, speaking, or opening his eyes, let alone sitting up or walking. The fevers exacerbate the tremors, headaches and the bouts of confusion caused by some of his medicines. What I imagine would be utterly frightening or disorienting for many, myself included, does not shake him internally. Not even when he is literally shaking head to foot.
There is so much happening inside his body.
There is so much happening in his body — including the fact that from that 0.1 glimmer/glint/flicker-on-the-horizon, his barely-there WBC count jumped the next day to a decisive 0.8, nearly tripled the following day to 2.3– and today rocketed to a gobsmacking 8.7(!) For the first time in close on 9 years his WBC count and Absolute Neutrophil Count (the part of the WBCs that fight bacterial and fungal infections) are in the normal range. Did I bury the lead there? Forgive me. It IS a truly remarkable milestone– just one that we haven’t quite had the chance to fully celebrate yet given all the complexities riddling the process.
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Two days ago the infectious disease specialists consulting on his case say all the tests done so far for fungal infections have come back negative. But because of the continued fevers and the lesion in the lung, they have to keep looking. The next thing to cross off their lists– even though they think the probabilities of Viral having it are very low– is tuberculosis. Testing for this entails temporarily moving out of the BMT unit to a negative pressure room on the oncology floor. We don’t really want to leave, and the team really doesn’t want us to either. But we all know it has to be done.
We make the move to the new unit and its cozy (some might call it cramped,) negative pressure room well past midnight. The next afternoon, in the midst of continued fevers, Viral has another episode where his heart rate jumps close to 200 and bounces around at that elevated level for awhile. The Rapid Response Team is summoned again and again they rush into the room, hook him up for an EKG, do a series of blood tests, administer electrolytes, magnesium, and a double dose of a fast-acting heart-regulating medication. They are surprised to see Viral smiling, surprised by how unflustered he is even with his heart doing these acrobatics. I want to tell them so many things about this rare being they are treating. I want to tell them for instance, that his heart is one of the finest they will ever come across. But instead, before they leave, I hold up a small wooden bowl filled with little cloth heart pins, made by women at the Gandhi Ashram in India. Viral has been gifting these hearts to the dozens of different people who’ve taken care of him over these past weeks. He tells them a little bit of the story behind the hearts, then asks them to choose their favorite one, and thanks them for their heartful work. It’s a small gesture that has touched so many of them in special ways. He is too exhausted to extend it now. So I do the honors. “Thank you for taking care of his heart,” I say (it is the heart of my heart.)
The doctors think this event was triggered by the fevers, and exacerbated by all the other things challenging his body at this stage. They are confident that the rising WBC is a sign of engraftment, and that as his new immune system revs up he will start to get better on multiple fronts. In the meantime they give him a dose of steroids to try and bring the fever down. It breaks late at night, but returns with a vengeance the next day.
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Like those in the BMT unit, the staff here on this new floor are thrilled by our small attempts to bring a little greenery, beauty, sacredness and delight into the room. And I am surprised all over again by how so little can go such a long way. “I’ve never seen a room like this anywhere in the hospital,” says the young doctor from yesterday, “It feels good just to be in here.” “I wonder what your home looks like– it must be so nice! Are those real flowers?” asks the nurse.
The physician’s assistant who originally informed us we would have to move to this unit had said to us, “We really tried to find a way to have you stay here in the BMT unit. You’ve made the room so beautiful – we hated the thought of needing to undo it all!” “I’ll come check on you,” says H. one of our favorite charge nurses, “We’ll float some of our BMT people each day to your unit and have them assigned to you.” (She’s been true to her word.) “We’ll get you right back here when those TB tests come back negative.”
When we moved, along with more functional items, the mandalas, the cloth vines, and flowers, the fairy lights, the gratitude board, prayer flags, and other special items adorning the walls and various nooks of the room, were all gathered up. The only thing we left behind are decals high on one wall. Decals of flowering vines, studded with bright-winged little birds. They are reputed to be removable, but I’m not entirely sure they live up to that part of their reputation. They are really lovely though. I put them up with the intention to “forget” them whenever we were discharged. An anonymous way to bring a little cheer to the series of patients who would inhabit the room after us. Because birds and flowers make most things better.
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It is easy to be here with Viral. There are so many little things to do, so much to attune to, observe and respond to, so many ways to attempt to make things smoother, safer, and less painful for him on different levels, especially in these times when the fever-state is strong, and he can’t be present in the same ways that he’s used to being present for himself. And when there is nothing immediate to do, it is easy to sit quietly with him in the room. To simply breathe together. It is easy to be here with him, even when it is hard. In these past days, it’s only when I leave the hospital late at night, that I sometimes am slammed by– sadness isn’t the right word, and neither is grief–maybe it’s a kind of grateful, awestruck, sorrow? Such long-drawn out pain. Such steely strength beneath the bodily fragility. Such a time we have shared and are sharing together. I register his grace and mortality. I register the tenuousness, the blessing, the fierce medicine, the fiery, unrelenting mystery of it all.
None of these words are sufficient. No words are.
***
It is almost four in the morning and his fever which broke for a few hours, is now back. I call for the nurse to administer the IV Tylenol. Right as they arrive, so does a phlebotomist, here to do another blood draw for tests. He is not able to speak much, and he doesn’t take off his eye mask, but he holds out his arm for her tourniquet. She has a gentle almost grandmotherly way about her. When she slides the needle in, he says, “So seamless.” He says this almost every time. Sometimes I’m taken aback by it – the priority he gives, even in this fever-wracked state, to sweetly acknowledging people.
In a few more hours Nipun will swap in for me. He is always ready and up for whatever is needed. “You’ve got this,” he will say to Viral as he enters, “We’ve got this.” Then, with Guri, who has been such a steadfast companion on this road, I will head to my weekly chemo session –the tenth round of twelve. I realized recently, that somewhere along the way I’ve stopped thinking of myself as a patient. Any side effects I have felt in these past weeks are pale and inconsequential alongside what is happening in Viral’s body.
Faced with these persistent fevers, his racing heart, labored breathing and the continued fluid retention that has swollen his lower body– it’s easy to lose sight of the fact that overall things are moving in a good direction– and that engraftment (the vital key to everything else) is happening. His rebooted immune system is kicking into gear in its own right. Yes, it is a rough and risky road, and yes, there’s much to still be worked through, but he is in good hands. We are in good hands. With Guri and Nipun by our side, and our families and extended community on hand for anything needed, we want for nothing.
I think back to a moment earlier today. Viral, in a brief stretch of wakefulness asked me a question, and I paused because I didn’t have an answer. “It’s okay,” he said, “One thing at a time.”
One thing at a time.
***
When H. visits us, as she promised she would, she tells Viral how amazingly well he is doing for this stage in the process. “You’re doing everything right,” she tells him, “It’s going to get better. Just hang in there.” Then she tells us something that makes my day, “You know those birds you left in your room?” she says, “The patient who moved in, couldn’t stop talking about them. He thought they were the most amazing thing.”
The Poetry Of 