Hold On While I Hang On

By Behnoush Babzani

"Behnoush Babzani is no stranger to tragedy. A rare blood disorder meant risky treatments and agonizing recoveries. Terrifying diagnoses for the mother whose unwavering support she leaned on and for her own future as a parent threatened to break her spirit. But she denied despair and found her way to a resilient, life-affirming faith in the

• Language: English
• Publisher: That Guy's House
• Release date: May 4, 2020
• ISBN: 9781913479176

Book preview

Chapter One

Face down, my butt exposed, I lay on the cold exam table on top of crinkly paper, wondering how my life had taken such a dramatic turn. I felt as if I could identify every pulse pounding in my body. Terrified, I squeezed my mom’s hand as she leaned her head against mine and whispered, her voice sounding desperate, words of comfort. Dr. Charles, the strange physician we’d just met, was poking his finger into my right hip bone, as he explained he was trying to find the best spot to insert the needle for the bone marrow biopsy. Closing my eyes, I begged the universe, God or anyone else out there for this doctor to get the perfect sample of bone marrow that would show this was all a huge mistake; that I was actually quite healthy.

My mind shot to Sam, my boyfriend of the previous six months, and I wished that he was there to hold me. But before I could get too warm and cuddly, Dr. Charles announced he had found the spot, and that I needed to hold very still. Frantic suddenly, I asked him for the third time if it was going to hurt, and I got the same annoying answer as before: his other patients did OK. He had no clue. He’d never had it done to him.

In my head, I carefully replayed his short and casual explanation of the barbaric procedure, cringing as my insides tensed. I pleaded one last time with him to put me to sleep for the biopsy, but he reminded me that the risk of anesthesia was too great for such a short procedure. I wanted to throw myself to the floor and have a three-year-old’s tantrum and crying fest, but I knew it would be futile. There was no getting myself out of this miserable situation.

Dr. Charles was a straight to the point little man, who had apparently never learned the art of sugar-coating. He declared that he was going to begin in a far too enthusiastic manner. A stiff ball of nerves bundled in my throat, as the butterflies in my stomach were starting to feel like eagles. My heart was pounding so intensely, I was afraid it was going to distract the doctor. The sudden smell of alcohol spiraled my anxiety to a disgusted nausea. A sharp pinching pain shot into my right hip so fast that I forgot the instructions to not move and twitched in pain. He told me that was just the needle to numb the area, then reminded me again that it was important to stay perfectly still throughout the procedure. I became very present in the room, holding on to each sound and movement with heightened senses. I heard him ask for something from his assistant, then some clinking of instruments followed by yet another reminder not to move.

As my mom caught sight of the needle, her eyes widened and she squeezed my hand harder. Her loud gulp was a clear indication that she could have used some comforting of her own. I braced myself as I felt the awkward pressure of a needle going into the same spot as the last one, followed by a disgusting thudding sound. The needle had hit bone. I tightly held my breath, anticipating what would come next. I had never been so alert in my life; I was on his every move. The doctor seemed a bit hesitant when he told me the next part was going to be a little uncomfortable. Of course, I couldn’t fathom how it could have gotten any worse.

Pushing down on the needle that was now sitting on my bone, he used what felt like the entire weight of his body to crack it through. Every second felt like a lifetime, and every movement magnified as he bore down again until he was in the bone. He put even more pressure on my hip as my shivering body pushed deeper into the exam table. He swayed me back and forth as he tried to wedge some tissue and bone sample into the hollow needle. My mom’s voice was the only thing keeping me from passing out as I felt the needle scraping inside me. Dr. Charles said that he was now going to extract the bone marrow, and that he was almost done.

My whole body was stiff. My shoulders were so tight that they were finding their way above my ears. My eyes wandered back and forth as I tried to visualize the scene behind me. My mom shot a quick glance, and judging by how quickly she averted her gaze and swallowed, I knew she must have been horrified. In an instant, I was consumed with an overwhelmingly aggressive stabbing pain, starting from the tip of my right big toe and shooting all the way up my leg, straight into where the needle was sucking the marrow out of my hip. I surprised myself as I let out a primal moan, followed by the loudest screech of full-blown pain release. It was, without question, the worst feeling I had ever experienced. The breath had been knocked out of me, and I couldn’t gather the energy to remember how to inhale until my mom caught on and put her forehead back to mine and walked me through breathing, in, then out.

I was panting with my eyes shut tightly, as beads of sweat formed on my face. I was biting my lip to hold back more tears; so many had already poured out. The situation grew intolerable. I was certain that I was on the verge of blacking out. At that moment, I felt overcome by a heavy nausea and a feeling that I was going to throw up; the urge was out of control. Just as I felt like I couldn’t take another second of this torture, the doctor said two beautiful words.

All done.

I then remembered how to breathe again. As I was being bandaged, we were told that the results would take about a week, and that we’d need to see the doctor in person to review them.

Though not a word passed between us, the ride home seemed chaotic in mine and my mom’s thoughts. Leaning to sit on one side because of the pain in my hip, I closed my eyes and kept hearing Dr. Charles’s voice and his suspicions of a diagnosis: Leukemia, Aplastic Anemia. He had mentioned a bone marrow transplant, and while I pretended to be shocked by how rapidly this had all happened, I had to admit to myself that I’d been avoiding my symptoms for some time, until I no longer could. I felt embarrassed to have hidden the signs from my mom, who would have instantly grown concerned. We’d been down this dreadful road before.

But then things worsened, and I couldn’t continue to ignore how uncharacteristically fatigued I was starting to feel. I was withdrawing from friends because I couldn’t keep up with our usual hyperactive shenanigans. It was getting increasingly difficult for me to engage in daily activities without getting out of breath or exhausted. My sleep when you’re dead policy was out the door; I was sleeping greedily, as much and as often as I possibly could. I cut my college classes to get more rest, or simply snoozed right through them when I did attend. Going to work as a makeup artist had always been rewarding and fun, but then I started needing to race to the bathroom to grab quick naps in the stalls.

I knew I couldn’t keep making excuses (to my mother or myself) for the random bloody noses and bleeding gums. When I noticed the pancake-sized bruises marking my body like tattoos from head to toe, I tried to deny them by covering them with long sleeves and pants. I felt compelled to hide them from my family, friends, and even Sam, so that they wouldn’t overwhelm me with their shock and questions; I wasn’t prepared to deal with the answers. Even though, and perhaps exactly because, these symptoms were painfully familiar and almost identical to those I’d lived with seven years earlier, I couldn’t bring myself to think about what they really indicated. Deep down, I was profoundly afraid to confront these signs, especially given how happy I was. My life was in a good and satisfying place, and the future was mine to embrace. It seemed the worst was behind me; that nothing could go wrong.

Chapter Two

We had to wait a week for the results of my biopsy, which felt like a lifetime. It was torturous. I drove myself crazy with every possible scenario, then talked myself into believing it would all be something simple; that my symptoms could be easily explained away and fixed. But then, I’d go back to allowing my imagination to run wild and freak me out with the possibilities. It really could have been nothing, but what if it were something? Something serious?

Two weeks earlier, I’d had a routine appointment with the dentist, a good friend of my mom’s. After I propped myself up into her chair, I caught the dentist catching a first glimpse of the dark bruises on my arms, which were hiding behind my sleeves. In defensive mode, I quickly explained to her that I’d been away on a rafting trip only weeks before. I went on and on, vividly describing how active I’d been that day on the water, when truth be told, I had been exhausted the whole time and hadn’t contributed much.

I thought I was being pretty persuasive, and I at least hoped that she was buying what I was selling, as I didn’t want her to suspect that anything was wrong and then go and discuss her concerns with my mom. She asked me to open my mouth, and I felt her mood shift and posture tighten as she started poking around longer than usual without even touching my teeth. She tapped the roof of my mouth with her instrument and examined the inside of my cheeks, then asked me if there had been any trauma to my mouth recently.

"What do you mean, ‘trauma?’ Why?" I asked, growing anxious.

She handed me a mirror to look into my mouth. It took no effort to see what was concerning her. There were tiny, dark red spots covering the inside of my cheeks and the entire roof of my mouth. I had seen these same spots before, seven years earlier.

The areas that my dentist just barely grazed with her instrument started profusely bleeding. She explained, not making eye contact with me, that the only two causes for these marks were either trauma to the inside of my mouth – I was startled and then instantly embarrassed, as I was sure that she was talking about oral sex, which was incredibly awkward given that this was my mother’s friend – Or else, she continued, breaking me out of my zone of humiliation, something is going on with your blood, which would support the bruising.

She didn’t wait for me to respond before insisting that I alert my mother immediately and arrange to see a doctor. As a family friend, she was well aware of my history and wanted me to get checked out right away.

I promised that I would go see the doctor, but urged her not to tell my mom, who tends to think the worst and panic. I wanted to avoid all that, especially as we didn’t even know what was going on yet, although the truth was that the last thing I wanted was to face any reality, let alone think about putting my family through any kind of drama again.

Racing to my car, I began to hyperventilate while struggling to hold back my tears. I aggressively pulled down the rearview mirror and angrily examined my mouth again. I felt a mixture of revulsion and confusion as I looked at the bruises on my arms. It had been different when I was the only one aware of these symptoms. When she referred to them and brought up the past, I instantly became terrified and filled with dread. I had thought I was done with all that. It was in the past, a part of my childhood.

Days later, I saw my doctor and had bloodwork done. I moved back and forth between being certain it was all a big mistake, and much ado about nothing, and thinking the absolute worst; that this was really happening again. I struggled to keep it all from my mother, who noticed I was acting differently. I figured she’d simply assumed I was sad because I was going to be separated from my boyfriend, Sam, as we were about to leave for our special mom and daughter trip to Rome. My tirelessly hardworking mom needed a getaway and had planned a beautiful trip to Rome for the two of us, as well as her friend and her daughter.

Our packed suitcases were sitting in the living room the day before our planned departure when the house phone rang. My dad and brother, Bobby, weren’t home, and my mom was out running last-minute errands and checking off her preflight to-do list. Expecting it was Sam calling, I quickly answered.

Hearing my doctor’s voice on the other end, and that hauntingly somber, whispering tone, I was overtaken by a sense of strangulating shock. I had almost forgotten that I was waiting for results. I sat down at our kitchen table, bracing myself for what could come next. It was starting to get dark out, but I didn’t bother to turn on any lights.

As soon as the doctor expressed her concern about how low my blood levels were, I fought back, arguing that low counts were frequently caused by mild iron deficiency, and that vitamins almost always helped. She cleared her throat and spoke precisely, as if to ensure I would not misinterpret any of her words.

Behnoush, your blood counts are very low. They are as low as they were when you had Aplastic Anemia seven years ago. I would like you to go see a specialist as soon as possible.

I froze. No, no, no this can’t be happening, I thought. I was twelve when they said I was all better. They told me I was cured. How could it have come back?

I had been through this already and fought like hell. My doctor asking if I wanted her to speak to my mom rocked me back to reality. I panicked. My mom? No! She could not find out about this. I explained that we were leaving for Italy first thing the next morning, and that I would deal with everything as soon as we got back.

At that, her voice rose with what was clearly urgency. Now she called my blood counts critically low, so much so that if I got on a plane, my brain could suffer internal bleeding and I could die. She repeated several times that I not under any circumstances get on that flight. I, meanwhile, was stunned by how casually she had used the D word. I couldn’t wrap my mind around how on earth we were even having that conversation.

She gave me the number of an oncologist named Dr. Charles and instructed that I see him the next morning, so that we could find out exactly what was going on. Everything had gotten too real too fast, and I couldn’t make sense of it all. I wondered if this was real life or some totally deranged nightmare. I had resisted, argued, and quizzed her, and was starting to get a hint of the idea. I tried to convince the