[In December of 2023 I was unexpectedly diagnosed with Stage 3 breast cancer. Not long afterwards my husband’s eight year journey with a serious bone marrow condition morphed into something more complex. Below is an update shared with loved ones. For the immediate future we will be using this platform to share glimpses from this ongoing journey.]
Dear Ones,
We hope this note finds each of you well and wonder-full. It’s been several months since our last update and much has transpired in the interim.
From our end the most significant development was learning in January that Viral’s condition had advanced into a very high-risk form of MDS. Over the last two years he has become increasingly dependent on weekly transfusions. The complementary modalities that supported him effectively for so many years no longer seemed to work. A bone marrow biopsy confirmed that he would require a bone marrow transplant as soon as possible.
This unexpected news came while I (Pavi) was in the midst of a challenging chemotherapy regimen, compounded by a painful case of shingles and high fevers. In my weakened state I struggled to fathom this turn of events. Almost nine years of watching him rise through a difficult and dramatically life-altering diagnosis and now– this. To have Viral undergo such a complex, uncertain process while I was debilitated by cancer treatments seemed a heartless twist of fate. It felt like my faith in the universe was being shredded. Yet Viral, in his quiet, steadfast way, took it all in stride. Never doubting for a moment that we had all that we needed to face this (whatever “this” was,) together.
During those toughest months, my sister Deepa carried so much of my load for me. I am not sure how or when my little sister got to be so strong. I leaned on her, and on my sister-in-love Guri too. She and Viral’s brother, Nipun have been with us at each turn. Supporting different aspects of this inexplicable journey with their wholehearted presence, and unique capacities. The two of them have moved in with us for the near future. The love of this trio, along with that of our parents, our extended families, our community (including all of you) and the goodwill of many kind strangers have helped carry us to this present moment, and beyond.
Viral was admitted to Stanford on May 3rd for what is anticipated to be a month of hospitalization. Following five days of chemotherapy he will undergo a bone marrow transplant tomorrow, Wednesday May 8th. Day Zero. During this extraordinary procedure he will receive stem cells from an anonymous donor– someone, somewhere in the world, who even as I type this, is preparing to give a life-sustaining part of him or herself to a stranger in need. Significant advances in the field have meant that in recent years patients no longer require perfect matches for transplants to be successful. A fortunate thing because Viral has no 10/10 matches available. None in 2015 or now. But today there are fifteen 8/10 matches for him in the registry. One of them is Wednesday’s donor.
Post-transplant Viral’s own white blood cell count will fall to zero. The immune system he has built over a lifetime will be erased. Over the next days and weeks he will be closely monitored as the new stem cells begin production in his bone marrow and that vital WBC count rises. Such a deep and complete reboot (even his blood type will change to that of his donor,) is riddled with precariousness and unpredictability for a prolonged period of time. Side effects of varying degrees of severity are expected to be part of the process. The first month, the first 100 days and the first year post-transplant are all significant milestones. We are taking it one day at a time.
We cannot say enough about the infusion center team at Kaiser and the Bone Marrow Transplant team here at Stanford. The former have given Viral life-saving transfusions for the last two years, and have taken care of my chemo since January. Between the two of us we were in their unit upto five times a week. The nurses and medical assistants have become so dear to us. They went above and beyond to ease our journey. We continue to be humbled by their heartfulness. The BMT staff here at Stanford have enveloped us with a warmth, diligence and dedication that is astounding. The depth and immediacy of the connections and conversations that have happened/are happening do not feel accidental.
Right now I am halfway through the second type of chemo in my regimen. I have six more weekly doses of chemotherapy ahead of me, followed by a month of rest, a surgery in mid-July, then daily radiation for five weeks. While there is still a toll on the body, the current period has been exponentially easier on me than the first three months. I feel back in my center and able to resume a large degree of normal activity again. The immense blessing of this is that it allows me to now spend much of my time with Viral at the hospital, including overnight. This was not a given.
Viral’s outlook is and has always been, one of deep readiness. A readiness to engage with an emerging reality and anything that may arise. He senses that life has, by definition, prepared him for this time. That rather than cultivating, he is being cultivated by this process, and he brings to it a deep willingness and gratitude, for being given this context to grow in. Witnessing his unshakeable trust during my own fraught health journey, has slowly strengthened something in me. We feel the mystery and elegance in all of it; in the timing of medical advances that make this transplant a workable option, in the unconditional togetherness with family, in the depth of connection to our exceptional care team, and in the quiet flow of handwritten cards, care packages, depthful emails, voice memos, and offerings of nourishment, poetry, prayers and tremendous heartistry. Though we haven’t been able to respond to each one yet, we receive it all with cupped palms. Struck by the visible and invisible web that connects and holds us all.
We are very aware of how privileged we are. It is common for many cancer patients to have no caregivers. They go through the intensity of treatment alone. Many patients in need of a bone marrow transplant cannot receive one simply because they do not have someone who can take care of them afterwards. Even in the midst of excruciating moments it’s been clear to us that there is far greater suffering in the world. Our hearts have broken open. Pain is a profound connector. So too is compassion. Even when my trust in the universe was in tatters, divinity shone through in the beings that surrounded us. The holiness of hearts alight in service is palpable.
At this time I’ve returned to an old practice of reading Sri Aurobindo’s Savitri each morning. Here is a passage that struck both Viral and I with particular resonance:
“In the casual error of the world’s ignorance
A plan, a hidden Intelligence is glimpsed.
There is a purpose in each stumble and fall;
Nature’s most careless lolling is a pose
Preparing some forward step, some deep result.
Ingenious notes plugged into a motived score,
These million discords dot the harmonious theme
Of evolution’s huge orchestral dance.”
***
We are grateful to be dancing in this bewildering, breathtaking choreography with each of you.
Much love,
Pavi and Viral
The Poetry Of 