Life Is Short (No Pun Intended)

by Jennifer Arnold

  The fourteen-hour flight to Newark was uneventful, thank goodness. I was uncomfortable for much of the trip, so I was really relieved when we landed. Between connections, I called Bill to let him know I was okay, and he told me he was making out just fine with Zoey and Will, although everybody missed me.

  Unfortunately, our flight from Newark to Houston was delayed. But fortunately, my bleeding had stabilized somewhat. When I finally got to Houston, my parents picked me up at the airport and took me to see my doctor, where I immediately had a CAT scan, an MRI, and some other tests. I was relieved to be back in the United States and was hoping for reassuring news to pass along to Bill overseas.

  The news was not good, though. I had a malignancy in my uterine wall, the direct result of the molar pregnancy. It was this tumor that was causing the bleeding. But the news was far worse than that. The problem was that the cancer had already spread to my lungs, and I needed to start aggressive treatment right away.

  Again, there was no time to waste on self-pity or misery, but rather it was time to intensify the survival mode I had already been in. For a few seconds, I did wonder how this could be happening to me. I felt like I was in the middle of a very bad dream, but all I could do was keep moving forward. It seemed crazy to me that I had been in India two days ago, having just adopted our daughter, and now I was home without my family and diagnosed with a stage 3 cancer that required intensive treatments immediately. My gynecologist immediately referred me to a gynecological oncologist, and I met Dr. Concepcion Diaz-Arrastia, who has turned out to be not only a talented oncologist and surgeon but a dear friend.

  When I told Bill, he took the news as well as he could. I think it was still unbelievable to both of us in different ways. Life had turned upside down on what felt like every front in a matter of a few days.

  Somehow Bill managed to complete the rest of Zoey’s adoption in three days, possibly the fastest international adoption ever. He had a little hangup getting her visa, as they weren’t able to get to the U.S. embassy in New Delhi until Friday afternoon. The embassy told him they would probably not be able issue the visa until Monday. Bill wasn’t willing to accept that, explaining how urgent it was that he get back to the United States and that he was willing to wait all day for the visa. His stubbornness paid off. Even though the embassy was officially closed, with the monitors turned off and the lights out, he left there with Zoey’s visa.

  There was also a little trouble at the airport. Someone from the Indian army stopped Bill as he was going through customs, wondering why he had a little Indian girl with him. Apparently, there was concern that Bill might have been trying to smuggle Zoey out of the country. Even though Bill pulled out a document that showed Zoey was his daughter, they unzipped all his bags and detained him, while both kids were crying and screaming. I know it wasn’t easy for him. Finally, a supervisor walked over to see what was happening, examined Bill’s documents, and concluded he was legitimate. It wasn’t surprising that this happened to Bill, as there are not many international adoptions out of India. Bill was extremely grateful when he was finally aboard the flight to the U.S. I was certainly glad to have him and the kids home.

  • • •

  DECIDING ON THE hospital where I would be cared for put me in a bit of a quandary. The hospital where I worked, Texas Children’s Hospital, had recently opened the Pavilion for Women, a comprehensive women’s care hospital within our children’s hospital. My oncologist, Dr. Arrastia, was the chief of gynecological oncology there, but also continued to care for patients at the other adult hospitals in the area. Although my oncologist worked at Texas Children’s Hospital’s Pavilion for Women (my hospital), they were not yet equipped to administer chemotherapy to adults, so I was supposed to have all my treatments—both inpatient and outpatient—at Methodist Hospital down the street. However, Dr. Arrastia talked with the executives at Texas Children’s, and they ultimately made an exception to care for me at my own hospital because of my size and airway issues. Methodist only had adult-sized surgical and airway equipment, and Texas Children’s was also much more adept at managing my difficult airway for surgery. My greatest relief was that my anesthesiologist was someone I worked with all the time and knew well.

  Because initially the chemotherapy wasn’t stopping my tumor’s growth, we decided I needed to have surgery, a total abdominal hysterectomy, which took place on October 30 at my hospital, Texas Children’s Hospital. I was more nervous about surgery than the chemotherapy or the cancer. I knew I had a difficult airway, and I had not been intubated since my hip replacements during pediatric residency more than ten years earlier.

  Fortunately, the surgery went well. My anesthesiologist was able to intubate me without complication, and Dr. Arrastia felt the removal of my uterus was very straightforward, no surprises. I was in the hospital a few days and then my chemo regimen began almost immediately, as I still needed to treat the nodules in my lungs. The hormone levels in my blood that tumors secrete had been so high that we knew my cancer was aggressive.

  I was back to going to the hospital weekly for chemo, with alternating levels of treatment. One week would be on an outpatient basis, in which I would be hooked up to an IV for four to six hours. The following week, I would stay overnight at the hospital for my treatment.

  Because before and after surgery, the beta HCG numbers—the hormone markers used to test for pregnancy and my type of cancer—weren’t going down at the rate we were hoping for, and I wasn’t initially experiencing as many side effects as I should have, Bill had an epiphany, and it had to do with the dosing of my chemotherapy. To his way of thinking, I wasn’t getting the proper dosage, because even though I was a Little Person, I had close-to-average-size organs for adult maturity, specifically my liver. My organs just happened to be packed into a tighter space. I was getting dosed, though, based on my weight and height, which is typical for chemotherapy dosing. The risk of arbitrarily increasing the dose too much is that chemotherapy is toxic and that could be life threatening to me.

  Bill and Dr. Arrastia discussed the theory, and they agreed that I should be getting a higher dose than was normal for someone of my height and weight. Instead, Dr. Arrastia based the calculation on my liver size. His theory turned out to be correct. As Dr. Arrastia increased my dosage, my hair started falling out and my numbers went down, after a little over three months eventually reaching zero!

  To add to the stress during all of this, Bill and I had given our nanny some time off to aid us in the bonding process with Zoey. Even before my medical emergency, we had decided we would give her a four- to six-week hiatus when we got home from India with Zoey, just as we had done when we brought Will home from China. When you adopt any child older than an infant, it’s important to minimize the number of people in the household those first weeks to keep the child from becoming confused. When children grow up in an orphanage, they are accustomed to caregivers coming in and out in shifts, so we needed both Will and Zoey to understand that we were their parents, not caretakers, and we were never going anywhere. This helps them to develop a secure and loving bond with their new parents. The process had worked beautifully with Will, and we wanted to do the same with Zoey, despite the medical whirlwind of treatments that I was experiencing. We kept the camera crew away, and we even limited the amount of time the grandparents could visit. Even though the relatives thought we were crazy, everybody respected our decision.

  Given the fact that I was undergoing weekly chemotherapy and recovering from major surgery, the decision to give Kate time off was no longer as easy as originally planned, but we were also fully committed to bonding as a family unit during this crucial time of transition for Zoey. To say it was overwhelming would be an understatement! Bill became super dad and super husband!

  Bill and I, as a result, were beyond exhausted. Bill was bringing me back and forth to the hospital for treatment, all the while taking care of Zoey and Will. My parents helped out a lot, and when we felt it was appropriate to bring Kate back in
to the fold, we felt some relief. However, Bill, who was and always is the rock of our family, was at the same time enduring a herniated disc in his back—the result of a combination of scoliosis and an injury he had sustained while working out at the gym—that would eventually require surgery.

  I would be horribly sick for five or six days after a chemo session, but I still had the strength to hug the kids, tuck them in, and tell them how much I loved them. We even moved them both downstairs to the master bedroom so it would be easier for us to care for them or mobilize them if I needed to urgently go to the ER. I’m not sure exactly how, but in the end we made it through my post-op complications, weekly chemotherapy, and the challenges in bonding with Zoey.

  I officially went into remission on January 16, 2014, the date I was declared cancer free. My prognosis was excellent. I had a 10 to 15 percent chance of the cancer coming back in the first year, and if it didn’t, the chances of it coming back were only 3 percent.

  All in all, the year was an unbelievable one for Bill and me. We adopted two incredible children, Will and Zoey, and I beat cancer. At the time of this writing, February 2015, I am thirteen months cancer free, putting me in the 3 percent category.

  While we began 2013 as a couple, we ended 2013 as a family of four, gathered together from far-reaching countries and now home. The journey to get here was unlike anything we could have predicted. We couldn’t possibly have known what was ahead, both good and bad, and we wouldn’t trade any of our experiences for the world. We look ahead with this same mindset, ready to embrace and appreciate all that life has in store.

  EPILOGUE

  Bill and Jen

  SINCE RETURNING HOME FROM China and India with Will and Zoey, our hearts are full. Every day we see them grow and change, and in them we see boundless enthusiasm. In a lot of ways, they remind us of us and exemplify the lesson we learned from our parents—there is nothing we can’t achieve.

  So much has changed in just two short years. Zoey started off with us as a very frightened little girl. She was failing to thrive in her environment. Now, she is happy, bright-eyed, and well-adjusted. She is growing both in size and in character. Her personality is starting to shine through the shell she had developed out of necessity during her first two years of life in the orphanage. She has always been the quiet observer in the room. She soaks it all in, but don’t let her silence fool you, she is paying close attention to everything. At three, she is making great strides to make up for lost time.

  Will has always been pretty well-behaved. While no child is perfectly mannered, Will is the kind of boy who says “please” and “thank you” without being prompted. He is considerate of others and has an emotional IQ far beyond his age. He loves being around people, young and old. Most recently, during a parent-teacher school night, Will introduced me to each of his classmates by name. I didn’t see any of the other twenty-eight students doing the same. There is just something about him that goes beyond average. His heart is gigantic. He cares for his sister in ways only an older brother can understand. If he has a cookie, she gets half. If she is scared, he holds her tight. For a boy of four, he continues to impress.

  Both kids are now in preschool. They are making huge strides developmentally, leaving the past behind them and happily accelerating into their brighter future. We are both very proud of them.

  Since both Will and Zoey were diagnosed with achondroplasia, the likelihood they will require corrective surgery similar to the kind Jen and I had is slim, fortunately. Of course, there is a chance surgery will be in their future. And if that day comes, we will be there for them, watchful and worried, as our parents were for us.

  In terms of our recent medical issues, the last couple of years have been challenging to us both. Jen’s battle with cancer was downright scary. And while the doctors seemed confident it was always beatable, we are so very thankful it worked out that way. For Bill, his surgeries in November 2008 for the right hip and January 2009 for the left were far overdue. Since his time on crutches in high school, Bill had been walking around on a dislocated and partially dislocated hip. His pain was reduced dramatically and his happiness increased by a similar measure with the surgery. In 2014, he required surgical repair for a vertebral disc he had herniated while at the gym back in late 2012. That surgery took place at the Hospital for Special Surgery in New York, only nine months after Jen completed her chemotherapy.

  Bill’s decision to delay his back surgery until things at home had quieted down had him enduring significant pain for months on end. The back surgery was actually scarier than the skeletal surgeries of our childhood. There was always the risk that things could end up worse than before the surgery, and there was so much at stake. Recovery was a lot more difficult than we had anticipated and progress was slow, made harder by the fact that we have two energetic young children at home who love to be active with us.

  Bill is really not supposed to do any lifting, which is both frustrating and disappointing, as one of the best parts of being a parent to young children is lifting them up and snuggling with them. Things are getting better, though. Bill has recently been cleared to start physical therapy, which means he will gain more strength with every day. Jen, being cancer free, is also getting physically stronger and able to do much more.

  Going through these difficult times together has made us both realize just how much we were meant to be together. Bill has said that he doesn’t know if he would have done so well during and after his surgery if he hadn’t had Jen, and Jen is thankful for the incredible support that Bill has shown her.

  The truth of the matter is we are very grateful for every part of who we are, what we are, and how we were raised. We continue to seek inspiration from others whose stories of triumph over adversity help give us the strength to rise to the many challenges we face every day. In our younger years, we had to prove to everyone else that size didn’t matter. Now, we only need to convince two people of that.

  We wouldn’t change anything about our lives, not one thing. Had either of us not been born with skeletal dysplasia, we probably would have never met. It was in the stars that we be together, and from the moment we fell in love, our blessings have multiplied beyond our dreams. Thank you everyone for embracing us just the way we are.

  As we enter the latest chapter of our lives—being parents—we put all our energy into being a family unit and enjoying every minute we can spend together. We make every effort to look out for the best interests of our two amazing children, as do all parents. We both believe that Will and Zoey have had a remarkable few short years on this planet, but that the most exciting part of their story has yet to be written.

  Our lives have been a fantastic journey thus far. So much has happened in such a short period of time. Just eight years ago, we were single, living in different parts of the country, and didn’t know what we wanted out of life. Fast-forward to today, and the most amazing turn of events has occurred. We are parents of the two most amazing children in the world. Uncertainty and joy, which no doubt lie ahead, make life exciting. There are challenges we will need to meet in our future, some that we know about, and some beyond the unexpected vistas of possibility. We are learning so much about life by being parents.

  We are figuring out life as we go, appreciative of all it brings—from the wondrous joy of a new day to the rocky mountain that may stand in our path. Life is short, so enjoy every moment!

  Billy on the beach. Clearly I need to work on my tan and maybe get a procedure to straighten that right leg. The curls were natural.

  My mom and dad, along with the boys, shortly after Joey was born. Notice I am the only one looking at the camera. At least someone was paying attention.

  Mom’s dad (aka Grandpa) and his three grandsons. Notice, again, I am the only one looking at the camera.

  Bill and his first motorized wheels. Full tank of gas, bald tires, and no rules!

  One of those pictures Mom makes you take and you only appreciate twenty-eight years later.


  Jen and her first birthday cake!

  Jen and Grandma Shipman.

  Mom and Jen on the front stoop—contemplating the spirit of everything.

  Jen and Mom on a presurgery trip to Washington, D.C.

  Jen and Dr. Kopits, with my cast cut open so he could take a look before sending me home for a couple of months.

  Jennifer and her little brother, David.

  From left to right, family friend Susan Taft, Jennifer, and Jen’s aunt Chrissy. This was from Susan’s wedding. My aunt was the maid of honor and I was the best man!

  Bill’s mom and the back of his head.

  Beloved Aunt Chrissy.

  Jen striking a pose on the beach.

  From left to right, Jennifer’s aunt Barbara, mom, and aunt Chrissy.

  Jen along with Mom and Dad at graduation from the University of Miami in 1996.

  Officially Dr. Arnold, on her day of graduation from the Johns Hopkins Medical School.