There is no shortage of milestones when you are healing following a bone marrow transplant. You have the inevitable counting of days; day 21: being discharged from the hospital; day 90: having fresh produce; day 142: spending the start of Thanksgiving by jogging a 5K, day 300: biking 50 miles with a custom BMT survivor jersey to raise awareness for marrow donation; day 365: my new first birthday and a goodbye to precautions and meds; day 380: returning to work as a health care provider rather than patient.
You also have mirrors. I remember the mirror in my hospital room bathroom, which I stared in near the end of my worst day during the transplant preparation, after vomiting over twenty times, with diarrhea and a bladder infection, telling my reflection, “I don’t know how much more I can take.” And then you have the mirrors you see in others’ eyes, when you have to enter a store with a mask and gloves before your immunosuppression period is over, or when visiting home, in the eyes of your friends and family who are ill-prepared for your weight and hair loss.
Then there was the encouragement of one in my house that recognized my first fuzz sprouting from my scalp and the scars where Hickman catheters once emerged from my chest. For a survivor of a bone marrow failure disease, recovery is not a destination, it is a journey for the mind, body and soul, and as such, my journey continues.
My journey began in the fall of 2011 when a trip to the gynecologist and a painless bruise led to a complete blood count draw, which showed markedly low platelets and hematocrit. Three bone marrow biopsies later, I was diagnosed with aplastic anemia in the spring of 2012. Within two months, I was transfusion dependent for both red blood cells and platelets. In June, I was admitted for an allogenic bone marrow transplant with a perfectly matched sibling donor.
Now over three years post-transplant, this previous body of dysfunction leaves me in awe. It has been poisoned by medicine designed to kill every last stem cell. It has been deprived of sleep and nourishment. It has been injected with products from other humans and other animals. It has been resilient in coping with side effect after side effect. Moreover it has fought back to ski, dance, and paddle, pursue my hope of being a global healthcare provider, make love and make new life.
At Day 734, now back in Boston after just beginning a program at Harvard’s Public Health School, less than five blocks from Brigham and Women’s Hospital where my transplant occurred, I found out I was pregnant. My husband and I understood that due to the limited chemotherapy, I had a 50% chance of maintaining fertility. Prior the transplant, we were given the option of meeting with a fertility specialist to investigate our options but we declined this meeting, already feeling overwhelmed by the transplant process.
Even with a 50% probability, I was not overly encouraged that I would be able to get pregnant due to hurdles following treatment, one of which was changing dynamics within my marriage. During transplant you become incredibly reliant on your spouse for the most mundane of things, such as cleaning or errands, and you become to feel as a burden, even with their best effort to assure you that you are not.
While in the hospital where intimacy could be of most emotional value, you cannot lay in the same bed or kiss on the lips; touch is limited to gloved hands. I was fortunate to not experience GVHD during my treatment, however, once infection risk decreased and limitations on sexual contact were lifted, I experience severe pain likely from hormonal changes due to treatment. I am grateful for an excellent physician who listened to my concerns, and directed me to an OBGYN in Dana Farber’s Survivorship Clinic, with a subsequent referral pelvic floor specialist. Like most, I experienced amenorrhea for approximately nine months following transplant. Once they returned, my periods were unpredictable.
These hurdles explain the astonishment my husband and I shared during my phone call to share with him the result of my pregnancy test. Throughout my pregnancy and delivery, those who became involved in our care -- from midwives to hospital nurses to lactation consultants -- were inspired by our story. We had a rare gift and we are incredibly aware and grateful for him.
Today, I do not know what post-transplant day it is, which only speaks to my recovery. I am blessed to say there are days, even weeks where the transplant does not cross my mind. Prior to moving back to the Midwest, I had my final follow-up appointment with my transplant physician. It was a full circle experience. Nearly three years prior I walked apprehensively through the Dana Farber Cancer Center doors. Now I entered with a beautiful two-month old in my arms. I could not ignore the empathy on the faces of the other patients, as they assumed I was only beginning the road to treatment. I wanted to tell them, “I’m okay. I am on the other side.”
Now back in Michigan a few things remain: I could still lose my fertility at any time; seasonal colds are frequent and seem to drag on forever; and my energy level prior to transplant has never fully returned. Then there are things others wouldn’t understand, like when being discharged after delivery, the nurse warned I need to get out of the house every week so I would not go crazy. “Trust me,” I said. “I can handle a week at home. I did a year.”
Most present is the sense that I need to accomplish, see, hear, and do everything now, because I know tomorrow is not guaranteed. My chance of 10-year survival is high, but the data beyond just does not exist. I am also aware my risk of tumors, MDS and cardiovascular disease is substantially higher now. I think of this occasionally when I look at my son and know that he will only be eight when my tenth transplantation birthday arrives, which is to say I do not know if I will see his ninth year and beyond. That’s why today, even in in the rain, after his nap, we are going to the zoo. We are getting out there and living.
Through it all, I continue to be grateful for my husband, my sister, and all family and friends who were there through diagnosis, treatment, and recovery. My gratitude extends to those friends I have gained through my experience as a survivor, especially thru First Descents, which is a young adult survivor group based on shared experience and empowerment. Spending a week whitewater kayaking with peers allowed me to reflect on my own experience, and forge much needed friendships with those who understand the challenges of being a young survivor. I am also indebted to all that donate in their own way, be it marrow, blood products or dollars towards research.
I am alive, my son is alive, and our recovery continues due to your generosity. Now, off to the zoo.