A few months ago, I blogged about how my mom had recently been diagnosed with Leukemia. When I wrote that post, things were very optimistic. It was a disease that people learned to live with and something my mom would have for the rest of her life. It was a burden, it was scary, it was cancer, but it was manageable.
When my parents came to visit a few weeks ago, they sat us down and told us they had some news to share, and that’s when shit got scary. It turns out, the doctors discovered there was a specific mutation called 17p that my mom has. It’s not common, in fact, only about 5% of Chronic Lymphocytic Leukemia patients have it, and the prognosis just sucks.
I’ve waded through article after article about this 17p mutation and it’s just….hard. Science is hard to argue with, and the numbers are scary. Though my mom is not currently undergoing chemo (at this point, it would do more harm than good since her white blood cells are a disaster right now), she likely will need to endure treatment much sooner than expected (possibly in under two years as opposed to the decades we thought previously) which is frightening. I am doing my absolute best to remain optimistic and hopeful that science will progress in the coming years and that a trial or transplant will be the answer. Fingers crossed, y’all.
Cancer isn’t something that I’m familiar with. We don’t have a tremendous history of it on either side of my family, so it’s a very foreign thing to me. I’m not sure how to react, how to deal, how to be, how to talk…I’m just kind of taking it day by day without allowing it to consume me.
I use this blog for a lot of things and I’ve always been honest and true, and I’m going to continue to do the same thing as all of this crap unfolds. Yeah, I called it crap. Cancer is crap, so there ya go. It’s hard to figure out how to deal with crap like this in life, but for me, writing has been helpful, and it’s also been helpful for my mom. I asked her if she’d like to “guest blog” on occasion (she’s a very good writer), and she thought it’d be cool, so, here we go.
My mom wrote this shortly after her first visit to her oncologist and I found it to be very moving and real, and it really gave me a lot of perspective about where she is coming from. Reading what my mom is going through makes it so much more real, but also helps me understand so, so, so much more. I’m so grateful we share a passion for writing.
:: Guest Post from Mom ::
“The Waiting Room”
I had been dreading this day. I had been filled with fear and gut-wrenching torment ever since, three days earlier, my family doctor had referred me to a Hematologist / Oncologist due to high white blood cell counts. I woke early that morning, around 4:00, unable to sleep as fear and confusion filled me to the brim. None of this seemed real. It felt as if I was living someone else’s life. “Calm down,” I told myself. “You’re just over-reacting.”
I eventually gave up trying to sleep and got up at 4:30, deciding I’d go downstairs, have some decaf, and maybe load the dishwasher. I slipped my feet into my fuzzy pink slippers, threw on my old gray bath robe, and grabbed my glasses, hanging them around my neck. I quietly left the room so as not to wake my lightly snoring husband.
All the while, I felt this knot in the pit of my stomach. I felt like I just had to move, I simply couldn’t sit still. After loading the dishes, I straightened up the family room, cleaned the cat box, and took some cod fish out of the freezer for dinner. I glanced at the clock and it was only 5:15. My appointment was at 10:00, and I was counting down the minutes.
I had that sleepiness feeling, but my brain was so active that I knew I would never be able to fall back to sleep. So I lay down on the couch and flipped my way through a tabloid magazine I had swiped from my family doctor’s office three days earlier. I wasn’t interested and eventually threw it back on the coffee table, then laid back and started at the ceiling. I turned to check the time again and now it was 5:50. Time was moving at the speed of sludge.
I’m not sure how long I laid there, staring at the ceiling, trying to work out in my mind what I was doing seeing an Oncologist, even though my biological father and his brother had Leukemia, one chronic and one acute. Never in my life did I think I would get cancer of any form. It just didn’t register. “Well, I don’t have cancer,” I told myself. “My doctor is just over-reacting and I’m sure everything will be fine.” I did some deep breathing and visualization of how the appointment would go; along with more self-talk about the sheer ridiculousness of the situation.
I heard my husband stirring upstairs, so I went up to clean up and get ready. “Hi babe, trouble sleeping?” he asked and I nodded. He pulled me into his arms and whispered that everything was going to be fine. “I know,” I replied. But I didn’t. “I’ll be right there with you, every step,” he reassured me, rubbing my back in slow circles. “I know,” I replied. And I did.
We arrived at the doctor’s office about fifteen minutes early. It was in a non-descript building that I must have passed a hundred times, never noticing. I had been instructed to stop by the lab on the second floor to get my blood taken, and then to proceed to the waiting room on the third floor. I’m not an easy “stick” because I have baby sized veins that roll when pierced. Once I had nine sticks before a anesthesiologist finally found a vein. “I don’t have blood,” I recall, telling the mortified Phlebotomist at the time, sarcastically. Today was good though, and this one got it on the first stick. “Hey,” I thought, “that’s a good sign. This is going to be a good day.”
My husband and I then made our way to the third floor, taking a right as we exited the elevator as the sign on the wall instructed. We walked maybe ten steps and arrived at the doctor’s office, which was on our right. Suddenly I found myself facing double glass doors, with the words “Virginia Cancer Specialists” etched into the door on the right. Suddenly, everything slowed, things became more vivid, confusion filled my mind, and my husband’s voice seemed loud. “Come on, Honey,” he said, and I watched as he raised his right arm and grasped the handle of the door, opening it for me. I stood for a moment, frozen and unmoving. He gently placed his other hand on my lower back, and propelled me forward, whispering, “Let’s do this, Babe.”
It felt like crossing a threshold. It was if there was only that which came before opening this door, and that which would come after. I could feel my breathing quicken, as I slowly crossed over that space, now holding my husband’s hand that no longer rested on my back. I stared straight ahead, not really seeing anything. “Why am I here?” I thought. “What does any of this have to do with me?”
My husband pulled my hand, leading me forward toward the front desk. I felt like I was moving through a thick, dense air, everything thick and heavy. We arrived at a sign that said “Check in” with a happy face, pointing to the left. Happy face? A friendly young woman was at the desk, and gave us a beatific smile, motioning us forward. There were two chairs in front of the desk, so we sat down, and while my husband proceeded to give her all of my personal information, filling out numerous forms about medical history, symptoms, and insurance, I just sat staring. I had told my husband that I could do the paperwork, but he just said, “Nah, I got this.” She then instructed us to take a seat and advised that the doctor would be with us shortly.
We stood, and my husband, again holding my hand, drew me over to two chairs against the right wall. I sat down, feeling more than a little light headed, and continued staring straight ahead like I did at check in. “Okay?” he asked. “Uh huh,” I lied. No, I was not okay, otherwise why the fuck would I be in an Oncology waiting room?
Now sitting, finally I began to look around the room. It looked to be a perfect square, with chairs and tables against the walls and in the center of the room, on either side of the walk-up area for checking in. There were various shades of purple and something akin to maroon but a little more rose on the chairs, walls, and carpet, obviously meant to blend into a collaboration of soft and calming colors. But it wasn’t working as I felt anything but calm. The pictures were mostly of beautiful landscapes. “Pick anyone, I’d rather be there than here,” I thought.
My husband was still holding my hand, squeezing it occasionally just to make sure I hadn’t gone into catatonic shock. The room was about half full, with maybe 20 people sitting in the chairs scattered around. I slowly moved my eyes from person to person, and I naturally began to wonder at their own situations.
There was a young couple sitting in the far corner, surely no more than in their late twenties. I noticed the wedding band on the young woman’s finger. They were holding hands, and she was talking quietly to the man next to her, whom I assumed was her husband, with an adoring look on her face. Even sitting, you could tell he was a tall man. He was skinny, almost to the point of emaciation, with hollow cheeks and sunken eyes. “Oh God,” I thought, “surely not him. He is so young.” I was filled with horror and more than a little anger at the unfairness of it all, as I gazed at them with great pity. I was careful not to let them see me watching, see what I knew must have been a pitiable expression on my face.
There was an elderly woman directly across from me, dressed in a light pink warm-up suit and a pink baseball cap, clearly covering her hairless head. She moved very slowly, looking for something in her purse. She sighed deeply, unaware of her slowness or loud breathing. And she was alone. I could see the weariness in her from these movements and the sounds she made. Once she found what she needed in her purse, she gave another deep sigh and then just stared at the floor. “I wonder what kind of cancer she has,” I thought, “and why is she all alone?” I felt a deep sorrow for her, because I just knew her time on this earth was coming to an end. You could see it. It was palpable.
I could feel the fear rising like bile in the back of my throat. “I am going to the same practice as these so very sick people. “I don’t belong here,” I thought plaintively. “I can’t belong here.” My hands were shaking and I was starting to have trouble with shortness of breath. I leaned over to the woman, in desperation, so that I would avoid running screaming from the room, and blurted, “You need my shoes.”
She looked up at me, startled and said, “I need your shoes?” I glanced at my husband, wide eyed, and he looked at me as if I had just lost my mind. I looked back at her. “Yes. You have your pretty pink warm up suit, your cute pink hat, but your sneakers are white,” I explained in a calm voice that surprised even myself. “See,” I said, and raised my right pant leg to reveal my Nike cross trainers with the glittery pink swoosh on the side. I smiled over at her, and she, after seeing my shoe, looked up with a big smile, eyes crinkling. “You’re right. I surely do!” God, it felt good to see her smile. God, it felt good to smile. My breath began to slow. I could hear my husband snicker under his breath, shaking his head.
A brightly smiling nurse came out of a door to the left of the check in desk and called out a woman’s name. The lady in pink placed her purse on the chair next to her, and then slowly rose, grasping her cane. She reached down and picked up her purse, carrying it in her opposite hand. She moved very slowly, bent over, eyes looking down at the floor. I wanted to get up and put my arm around her and help her, but I was afraid that she might find that undignified. She glanced over at me as she walked by and grinned, “You have a good day, sweetheart,” she said. “You too,” I responded with such common words, but now with greater meaning. I watched her as she went through the door, hearing the beginnings of a conversation between her and the nurse, “It’s so good to see you again! You look lovely today in all your pink!” I heard just as the door closed.
I continued my perusal of the room, while my husband, who must have decided I wasn’t going to try to escape, let go of my hand, and picked up an ancient copy of Sports Illustrated, thumbing his way through, sighing. “That was cute, the pink shoes” he said. I shrugged as if he had asked me what was for dinner.
My eyes settled on an elderly couple near the center of the room. They must have been in their 80s or so, for they were very old. Both were exceedingly thin. His hair was gone, and her’s was a bit of a tangled mess of white and gray. They were not talking to each other, just staring straight ahead with odd blank looks. I knew they’d been here many times before. I wondered if my prognosis would require me to come here again, to come here often. Did they diagnose here, and treat somewhere else?
The door opened again, and a different nurse emerged. She called a man’s name, and the young people rose, with the woman holding on to her husband’s elbow. They moved slowly. Everyone here moved slowly. “How are my newlyweds doing today?” the nurse asked as the couple approached her. The young woman smiled, saying, “We’re doing just fine,” as they disappeared with the closing of the door.
Oh God, I stopped looking around at the others in the room. I could feel my eyes welling up with tears. I was probably almost 30 years older than that couple. Of course, I was probably 30 years or so younger than the old couple. It wasn’t fair, no matter how you sliced it. I just looked down at my feet, now overcome by fatigue. I just wanted to get this over with. Sitting here in this waiting room, where the purples and roses suddenly looked old and sickly, was no easy task. And the air was heavy, overly warm, and smelled of some cloying fragrance like lilac and vanilla. My husband had tossed the magazine back on the side table and took my hand again, patting it. We didn’t speak, we just sat, waiting.
After about ten minutes the door opened again, and I naturally held my breath. “Mrs. Brown,” the nurse said. I jerked slightly, then picked up my purse, taking my husband’s arm as we made our way to the nurse. I purposefully walked at a normal rate and kept my chin up. I wasn’t going to let anything make me feel bad until I knew if the news was bad. I took a deep breath, just before reaching the nurse, breathing out with a push of air. “I’m so glad to meet you all! This must be Mr. Brown?” the nurse chirped. “Yes,” replied my husband.
And with that, we walked through that door that separated the waiting room from what awaited us; across yet another threshold, which led to other rooms for good diagnoses, rooms for scary diagnoses, and rooms for unimaginably bad news. But it was that waiting room, where people waited for their turn, waited to hear their name, waited to live, and waited to die, that tore at my soul.
And as for me, with this walk, leaving the waiting room and crossing that threshold, life as I knew it, changed forever.