Today is the day that was meant to mark a shift in our lives, a day when we could put cancer behind us once and for all, and rejoice in Aaron's radiant health. A need to commemorate this day pulls at me today hour by hour, now finally overriding my silence. When I consider how many months have passed since I last updated our ongoing story, I am overwhelmed by how much has been left undocumented.
Examining our life, both what is visible and what is hidden underneath had become a habit for me, and a solace. I allowed myself to do it, often needed to, going as far as to imagine that chronicling the details could make a difference in the narrative-- as if the storytelling process was a deep and rhythmic spell that could govern the way this tale unfolded.
The version I want to write is not the one I will share today. In my story, I'd be living mindfully and Aaron would be cancer free and restored. There'd be a pattern in our story with solid answers. We'd be passionate and committed, not worn. Our life renewed, Aaron rejuvenated, myself finally at peace, not a zombie who is too fearful to turn a pen to her own life because she no longer believes that she can write a convincing tale of redemption, of how this transplant was our triumphant lesson toward a greater understanding and appreciation of life. The compelling tale I'd hoped to write of transformation would be uplifting and rise above the physical and emotional shocks of these past months.
Instead, the story beats have come as they have from the beginning--unpredictable and wild--even to the doctors who often claim never to have seen the condition before, who have no idea what to do next. Everyone seems to have suspicions or theories, but no one solutions that will actually make a difference. The transplant life is all consuming; the complications never-ending. Not a day goes by where we feel that this life is at all in our own hands and no matter how much I have tried to settle into and accept this, even retracting a painful distance from the act of documenting, from my words and my voice and my emotions to the point where I feel foreign to myself, no moment-by-moment analysis, no crossing borders into the past or the future, just staying put right here in this long day where Aaron is going on four months since eating normally and 45 pounds lighter--no, everything feels unrecognizable to me no matter what I do.
Each morning I awake to see what has emerged with a blossom of hope that Aaron will be less vulnerable and frail, and within minutes I must remind myself that there are no answers, not yet. The transplant is a salvation and also a prison. We are refugees in this transplant life. People who do not have a home. We wander each day, reading other people's stories, standing on their examples, seeking wellness from doctors who do not always hold us in golden hands. I go to sleep each night and wake each morning fearful that Aaron will fade away in those quiet hours. He tells me that he is bullet proof, but as I look at his trembling hand beside my own in those early morning hours, I find myself closing my eyes to the whole ordeal for one moment and then another. But this morning, I begin to remember the years of chemotherapy, the first time and then this most recent, and time of the transplant procedure which now seems so far away, twelve long months. I recall Aaron's insane itching upon release from the hospital and the aneurysm scare, and the laryngitis and it all comes back to me.
Yes, it was soon after Aaron lost his voice in the fall that I seemed to have lost mine as well. The complications arose one after another quickly and without any predictable pattern and then our beloved Onni died suddenly and unexpectedly and I allowed myself to forget that words are like magical beings who can shift frightening creatures into hopeful sprites of red and yellow, who will spread outward into an open field and bring me home to a place of refuge and dreams and my life with my incredible son and husband.
So here we are once again with my attempt to walk you along our path. Though I cannot do justice to the myriad experiences, lessons, and discomforts of these months, I can give you an overview and promise myself that one day I will write more fully. Shortly after discharge from the hospital last summer, Aaron began a unique vaccination trial which inoculated him with his own CLL tumor. It is believed that this will enhance the much desired graft versus tumor effect that leads to a cure post transplant. Aaron completed nearly the whole series, receiving more vaccines than other participants as they were able to harvest enough tumor to make additional vaccines; but he eventually had to pull out due to a persistent and ultimately recurring neutropenia. Neutropenia is a serious complication as it makes the body susceptible to infections. It was determined that the most likely cause was Rituxan, one of the medications that Aaron took to secure his remission. This late onset neutropenia has recurred multiple times since the transplant and it is unknown when the recurrences will stop. He is monitored frequently but it requires us to maintain restrictions to prevent exposure to infections. We don't know when he may be walking around with no defense in place.
Our dreaded, though not unexpected, adventure with graft versus host disease began in the fall as well but did not erupt fully onto the scene until January when Aaron's immunosuppression post transplant had been tapered down to very low levels. Within days of the last decrease, Aaron's immune system officially became 100% Sarah, and then she took over. We had prepared for this scenario mentally but it is one thing to prepare for these possibilities and another to live them. With GVHD, the cells of the stem cell graft attack that which they think is foreign which is essentially all organs and organ systems of the host body. It is very much like having an autoimmune disease. Aaron soon found himself on levels of immunosuppression above and beyond what he'd been on previously with no relief. GVHD is one of the leading causes of death in transplant patients, along with infection and recurrent disease, and while Aaron dealt with each shift in his body with strength and resolve, it was a challenge for him not to become exhausted by his efforts. He meditated and harnessed his energy, "I am you and you are me, we are one", he reminded his body each day, speaking to Sarah's cells, encouraging them to make peace with their new home.
It was this battle with GVHD that allowed our most current struggle to remain undetected for over 6 weeks. When Aaron's GI issues and weight loss escalated in April, the suspicion was for worsening GVHD. Biopsies confirmed GVHD in his GI tract and so additional immunosuppression was added to the regimen. Aaron GI symptoms worsened but despite the lack of success with this approach, more drugs were added. Although GVHD was suspected, multiple stool cultures were performed to exclude an infectious etiology. It was a last minute visit to a local infectious disease specialist that brought us the answer that we needed with a positive stool PCR result. Aaron had contracted the norovirus, the most common form of viral gastroenteritis. Neither Sash nor I were sick, and as Aaron hardly leaves the house, our suspicion is that he contracted this infection from the hospital. We quickly learned that this is a very common scenario for transplant patients and that it can take many months, up to 14, for patients to pass this virus.
A struggle soon emerged at Dana Farber between the infectious disease team and transplant team over the best course of action. The ID team insisted that Aaron come off the immunosuppression medication immediately so that his body could fight the infection. The transplant team insisted that they could not pull the drugs and would have to taper slowly to make sure he didn't suffer from steroid withdrawal or a damaging GVHD flare. The ID team postured that Aaron would not live long enough to worry about GVHD. And so we began the taper and are still in the process of lowering the medication levels. Aaron has been back and forth to Boston more times than we'd imagined at this point in the process for evaluation and supportive care but he is still very much within the grip of this virus. No one knows how long it will take for his T-cells to rebound. We can only wait and watch as Aaron's clothes slip further off his body and he grows further weakened by something that any of us would have passed in a few days time. I have never seen him more fragile and he admits that he has never felt worse.
In the midst of all of this, another complication arose. Within a matter of a few days, his left eye was suddenly compromised. He had a dark cloud in the center of his field of vision. At first his team imagined it must be GVHD of the eye, but in the end it turned out to be a problem caused by the high doses and long term use of steroids. A collection of fluid had developed behind his retina. He was monitored to see if there would be any resolution once the drugs were decreased, but in the end, he needed laser surgery as his right eye had also become affected. The procedure was completed last week and I am happy to say that his right eye is resolved and his left eye should improve within the next few weeks. This was our one success after a long stay in Boston.
Today is a day of reflection and though the writing does not come easily, I am happy to be giving this year further thought. We'd been told that this year would be one challenging ride and I can easily attest to this being the case. When we heard this pronouncement from the transplant team, we naively expected that all we had to do is get through this one year and then we'd have our lives back--the survivors walking away with a smile and a cure. It is clear to both of us now that what we bought is not such a neat and tidy package. In the end, I'm not sure how much we really believed that all of the loose ends would be tied so perfectly or else we would have jumped to this transplant option much sooner in the game. But still, I think that we'd hoped.
Now I understand that Aaron is a long way from a return to a normal life. We've recently heard stories from patients and doctors alike (they apparently save these stories for those who are in our position) of a two to three year period of challenges and complications that is one day followed by a sudden relief of issues. Perhaps this is our course and it has required us to reset our expectations. Aaron's immune system is on its own course. There is no way to measure how competent it is and we have to be very careful that he not contract another seemingly small virus that could set him back in the way this one has. We must remain in our new normal for a bit longer.
Each day we continue to learn that we must embrace the uncertainties in our life, that we can only see as far ahead as today, and yet still find a way to believe that we can not only manage the hurdles that are coming--and they keep coming--but also live with respect and joy for what we do have: each other, right here in this moment with our illnesses and issues, strengths and weaknesses, hopes and desires and fears and needs. And one amazingly special little boy who has delighted us even on our darkest days. There is so much learning in this process and so much to come. And today, we must accept all of this fully and learn to let go of preconceived time lines. In this acceptance, we find our way to celebrate where we are today.
While we aren't where we'd wished to find ourselves at the one year point, it could definitely be worse. Aaron could be dead, relapsed with cancer, or hospitalized long-term with complications that may not have a resolution. Aaron has survived a difficult year and I believe we have our cure in hand with Aaron still 100% Sarah. Her immune system is hanging in there despite a beating with an arsenal of drugs. She is here for the duration. And the real life Sarah is out to celebrate the event with us along with some other family members and this too is something we give thanks for on this special day.
I also want to once again praise and bless those who helped us last year and this. A transplant life is an isolating one by nature and having those who stepped forward was a much needed reminder that we are not alone.
There is one more piece of news. As many of you know, conceiving Sash naturally was a truly a miracle for us after years of struggle following Aaron's diagnosis in 2004. As with the first time, the artificial route once again held no promise for us as I struggled through last year trying for a second with no success. Friends and family thought I was nuts to add this endeavor to the mix and I finally let go of my need for another child and was even excited to raise Sash as an only; then another miracle blessed us. I have been keeping as quiet as possible on this subject, but after extensive testing on the guidance of a genetics counselor for any potential sperm related abnormalities(Aaron has endured a lot of medications over the years), we learned that the baby I am carrying is healthy. We also unfortunately learned that the placenta is compromised from a random mutation occurring post conception, completely unrelated to drug exposure or other factors. This condition may mean some complications for me later in the pregnancy, but our baby girl should arrive safe and sound here in November. G-D willing.
We look forward to hearing from family and friends as we continue this journey. I hope to be able to do a better job keeping the story accessible to all.
Happy Birthday to Aaron, and Suvi, our surviving dog, and our friend, Jude. Celebrate this blessed day.