The Space Between Questions and Answers
Managing unknowns from pregnancy to miscarriage to potential chemotherapy My husband and I moved to Boston after college. We both had professional careers and always talked about moving to a bigger city, more opportunities, and a new lifestyle change. We fell in love with New England early on. We would embark on many day and weekend trips exploring. We could be in the White Mountains within two hours, walk quintessential coastal towns all along the bay state, ski in Vermont, and hike the rocky Maine shore. International and domestic travel rounded out our early years together. Eventually we realized we wanted more: more space for ourselves, more space for our active dog, and more space to grow our family. We purchased our first home north of Boston. I meticulously planned out our future and approximately four years ago we had our first child. We were fortunate to have a beautiful healthy baby boy, everything seemed to be unfolding as I had planned.
Fast forward to the present day. Our son is four and we decided to have another child. We felt two children would be the perfect number for our family. Expanding our family to give him a sibling seemed right. And, we were both feeling the urge to soak in the newborn smells and snuggles one more time, and find out who this new little one would become. It seemed our family would then feel complete. I am a stereotypical type A personality. I'm an excessive planner (arguably to a fault), and suffer from generalized anxiety disorder. The more I can feel in control of my environment, the easier it is to control my anxiety symptoms. Before conceiving again, I planned it all: finances, childcare options, lifestyle changes, to try and calm my anxiety about future unknowns -- until the biggest unknown unfolded right in front of me. We got pregnant right away, which I know is not an easy feat in itself for a lot of couples. My 6-week ultrasound and bedside 9-week ultrasound were looking good.
Due to my age, my OB recommended NIPT (non-invasive prenatal testing) blood test at 9 weeks to rule out genetic abnormalities. The results came back a little over two weeks later, indicating a high risk of triploidy (when the baby has 3 sets of chromosomes instead of the normal 2). As a Physician Assistant, I immediately knew if this was the case, I would not have a viable pregnancy. T o be clear, the NIPT is a screening test and not diagnostic. More analysis would be needed for diagnosis. At this point, working in the medical field felt like both a blessing and a curse. I started researching to help calm my anxieties and to determine the next steps. Predictably, this only increased my anxiety. My husband, who knows my pattern, suggested I stop diagnosing myself and listen to my OB for recommendations going forward. A plan different from my own starts to take shape. My medical team recommends moving up my 13-week ultrasound and meeting with a maternal fetal specialist to schedule a CVS (chorionic villa sampling), which is essentially a placenta biopsy which can definitively diagnose chromosome abnormalities. It was the longest five days of my life: the waiting, the unknowns.
To try and distract myself, I play with my son, concentrate on work, busy myself around the house, and on my therapist’s advice, I start to write about what I am experiencing. When my husband and I went for the ultrasound, my nerves were through the roof. I know the ultrasound tech can’t give out information; however I knew right away the baby was measuring too small and I couldn’t detect a heartbeat. My OB confirmed my fears-- I had miscarried about ten weeks into my pregnancy, the unviable fetus still floating in my womb. My OB recommended a D&C (Dilation and Curettage--a procedure to dilate the cervix and remove the demised fetus and send to pathology for analysis). My husband and I opted not to send chromosome data. We did not want to know the sex of the baby, did not chose a name, and felt we didn’t need to confirm triploidy as a cause, as it was now a moot point. This was our way of dealing with the situation. However, I knew the pathology was important, as it could affect my health going forward. Through all the unknowns, I had a wonderful medical team and for that I’m grateful.
I believe everyone should feel like this. Patients should feel comfortable advocating for themselves, get prompt care when needed, have their questions answered, and have a team that provides emotional support when needed. Physically, the D&C itself was very easy as I was anesthetized. Emotionally, it was a different story. My body didn’t catch up with the fact that I was no longer pregnant. My breasts were still sore, my abdomen swollen, and the extreme fatigue, nausea, and constipation was still debilitating. My emotional swings were wild, similar to postpartum in my previous experience. One minute I was very upset, sad and crying and the next I was grateful for everything I have in my life, especially a healthy beautiful son. As I try to manage my grief, a new unknown emerges. My pathology report comes back positive for a partial molar pregnancy. As an oncologic Physician Assistant, the first thing I think of is chemotherapy. This is not a normal first instinct--in fact the OB doesn’t even mention this, as it is a rare complication of molar pregnancies. She understands there is no need to jump to conclusions and unnecessarily cause us more stress and anxiety at this point.
There are two types of molar pregnancies: complete and partial. At the time of conception, with certain genetic abnormalities, the placenta does not grow correctly. The cells that form the placenta (trophoblasts) grow out of control and can form cysts. The treatment for complete or partial molar pregnancy is a D&C to remove all the uterine contents. In rare cases, the abnormal placenta cells can imbed in the uterus and cause cancer. If one is diagnosed with a molar pregnancy, it is important to have hCG (pregnancy hormone) levels measured frequently to make sure they normalize after the D&C procedure. If they do not go down, steps to treat Gestational trophoblastic neoplasia (GTN) begins. This includes imaging, additional blood work, and potentially chemotherapy. Fortunately, GTN due to pregnancy has a very good prognosis. The emotional toll is another story. I am sharing my story with the hope of providing awareness on a little-known pregnancy topic, not frequently discussed.
If I am able to help even one other person who has gone through similar difficulties in their pregnancy, my goal will be achieved. In regards to my own healing process, I have learned some valuable life lessons:
#1. I cannot and do not have control over most things in life. What I can control is how I adapt and deal with the unexpected—that is what matters.
#2. I am learning to manage my anxiety by allowing myself to enjoy self-care and accept my feelings and grief. One day, I stayed in bed all day and read a romance novel because that is what I needed at the time. As my therapist said, this is the opposite of anxiety taking over--listening to my wants and needs and following through. I would typically tell myself to keep going, be present for my family, and continue my daily routine because I feel guilty. Now I am allowing myself time for myself as well, and becoming more in tune with my emotions. That I take as a win.
#3. I realize I am not alone in this process and have become more attuned to my husband’s grief as well and feel my gratitude for all his love and support. He too was offered grief counseling to help him cope during this difficult time and he said he would think it over. We’ve discussed this and continue working to be more in-tune with each other’s emotions and to keep our communications open. I’m learning we all grieve differently.
#4. In addition to writing about my experiences, I’ve found emotional and physical recovery through nature. My active dog requires exercise each day. In stressful times, I’m not sure if it is she or me that needs these walks more. Walking clears my head, calms my racing mind and increases my appreciation for all that is around me. Seeing tidal pools that make different shapes, planting herbs and watering the flowers, hiking to a mountainside lake, watching a doe on a nearby trail--all have helped my healing.
#5. Rituals help too. Recently my husband, son, and dog took a hike to one of our favorite lakes. We picked wild flowers and created a memorial where we had a small service. We vowed to head back to this spot each year. My work has been helpful as well. Working in oncology helps put life in perspective. I know I am more fortunate than a lot of my patient population. There is no discrimination for cancer and/or miscarriage—it can happen to any of us. I feel my experience has helped me be more emotionally available to my patients. In regards to the future, there are still many unknowns ahead-- and that’s okay. At the time of this writing, many questions remain: will I require chemotherapy?; will we consider trying again for another child?; how many children is the “right” number for our family? I have learned that life has many unknowns and I am becoming more comfortable letting the answers to hard questions unfold—which is hard for me. But I’m learning. Regardless of the answers may be, I know that despite the challenges, everything will all work out. One child for our family is more than okay, so is two, three or whatever is meant to be.
ALLYSA
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