What the Doctors Don't Tell You: One Woman's Journey Through Hodgkin's Lymphoma
238
What the Doctors Don't Tell You: One Woman's Journey Through Hodgkin's Lymphoma
238Paperback
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Overview
Product Details
| ISBN-13: | 9781496971616 |
|---|---|
| Publisher: | AuthorHouse |
| Publication date: | 04/27/2016 |
| Pages: | 238 |
| Product dimensions: | 6.00(w) x 9.00(h) x 0.50(d) |
Read an Excerpt
What the Doctors Don't Tell You
One Woman's Journey Through Hodgkin's Lymphoma
By Kimberly Joy Beam
AuthorHouse
Copyright © 2016 Kimberly Joy BeamAll rights reserved.
ISBN: 978-1-4969-7161-6
CHAPTER 1
Finding the Lump
I had put myself on a diet the previous June. Pushing out of my size 10 pants into size 12s, creeping past 159 pounds, was not acceptable. I was near Ithaca, staying with a dear friend, Jessica, when I decided it was time. I got serious and signed up with an online weight-loss system.
Over the next couple of months, my weight dropped gradually, two or three pounds a week. Then, as the fall approached winter, the weight dropped off faster: I could eat a giant meal at a restaurant — a cheeseburger, fries, and cheesecake for dessert — but on the scale the next morning, another pound would be gone.
On April 1, I was on the phone with my good friend Erin. We had been on the phone for some time, and as the conversation progressed, I grew bored of pacing and took my fingers and jabbed them into my collarbones.
My collarbones were now sticking out prominently like a model's, and I was rather fond of them. I raised my collarbones up and felt around their curve as deep into the hollow as my body would allow. My right hand was rooting around in the lower corner.
We were trying to end the conversation, doing the last mumbles before hanging up the phone. Instead of my usual, "I love you," I blurted out, "Oh, my God! I think I found a lump!"
Erin's father had been the president of the American Cancer Society on Long Island for almost her entire life. During her high-school summers, she worked at camps for kids who had cancer. When she replied, "Go to the doctor tomorrow," I took her seriously.
"I do have the day off, and I don't have any plans," I thought aloud.
"Good, let me know how it goes," she said as we hung up.
The next day, my doctor felt inside my collarbone and at a different lump I had found in my left breast a couple of months earlier. I wasn't concerned about either, until she said, "I don't think the lump in your chest is anything, but the lump here" — she was probing my collarbone — "I'm just not sure. I'm going to call for an ultrasound of the breast and a CT scan for this lump." She kept pressing her fingers in the lower corner of my collarbone. She would walk away and then come back, have me move my arm to create the hollow in my collarbone, and press her fingers in again, clearly thinking.
She ordered a CT scan for the following Friday, April 9, 2010, one week to the day after my appointment with her.
* * *
During the week between the doctor's visit and the CT scan appointment, I sought other people's opinions about the lump, including my landlords'. I lived in an apartment in Nottingham, Pennsylvania, above a garage at the end of a quarter-mile driveway. It was such a great spot. It was adjacent to the Herr Factory barren lands. Occasionally in early morning on a Saturday, like around 6:00 a.m., a foxhunt would go through with barking dogs and horse riders with red coats, which are apparently called "pinks." The property had a pond, a chicken coop, and cornfields at the top of the hill, and one day an escaped emu ran around at the top end of the driveway.
I walked into my landlord's kitchen and the female half of the couple leaned in and placed her fingers in the space behind my clavicle. "I'm sure it's nothing," she said.
I agreed. Of course it was nothing. I was God's chosen daughter; not only was I a Christian, but I came to faith from Judaism. Of course I would be just fine:
1. God had my back.
2. I had planned to go to graduate school for a master's in divinity. I had been accepted and was headed to school in Chicago. Nothing was going to stop that.
* * *
Jean, a dear friend of mine in her sixties, drove me to Syndersville Regional Hospital. We were both concerned about what the CT scan involved and whether my body might have some sort of reaction to the chemicals. She promised me eggs for breakfast afterward, since I had to fast before the test.
I wore my going-to-the-doctor clothes — a black tank top with a built in shelf bra and a little bit of lace at the top, a pair of athletic pants with no zippers or grommets, and a knitted gray cabled cotton hoodie sweater I'd bought in Philadelphia the previous Thanksgiving.
I went in for the CT scan first; an ultrasound would be next. The technicians put the IV into my vein. I didn't know the IV drip had to be turned on; I thought because the needle was in my arm and the curly tube was attached to the hanging drip bag, the liquid had to be going into my arm.
The tech looked to be about eighteen years old, as did her assistant. They were both white and ridiculously thin. The CT scanner had a scooped bed to lie on, where the sides were higher than the bottom. The techs told me to lie down on the curved bed with my head on a pillow and another pillow under my knees. They covered my legs with a blanket and told me, "Raise your hands up over your head."
The IV line pulled a little when I lifted my arms. The bed started to slide into the CT scanner.
A mechanical female voice told me to breathe and then not to breathe. I was instructed to follow the directions of the disembodied voice. They would do one scan without the contrast dye and then one scan with contrast. I didn't know what that meant.
When the voice said, "Take a deep breath, and hold it," I filled my lungs and held my breath as I rode the scanner bed in and out of the cream-colored, doughnut-shaped machine. There was a window of about six inches through which I could see a camera whirling around; it sounded like a large industrial fan and created a chilling air current. The room was cold to start with. The fan's blowing made me shiver, which made it almost impossible to keep still when the disembodied voice directed me to hold my breath.
"Okay," the tech said. "We got that one. Now we are going to start the dye."
There was another high-pitched whirring sound. I felt pressure in my arm as the liquid from the contrast dye forced itself into my body. All of a sudden, there was a cool liquid all over my neck.
The flighty tech came charging into the room and said, "Ugh! These new IV tubes do this all the time. It's beginning to really get on my nerves."
But I was laughing. It just struck me as funny — the sensation of cold liquid all over my neck and the tension of the whole procedure.
As the tech stood over me, trying to fix the problem, I realized that I was warm all over, crazy, crazy warm. It sort of felt like I had peed my pants.
A student of mine named Daisy had warned me that might happen. She'd had a CT scan just a couple of weeks earlier. At softball practice, the ball machine had chucked a ball going forty or fifty miles per hour at her, and she hit it with the wrong part of the bat. The ball nailed her right in her throat. The techs were concerned Daisy had shattered her windpipe. She hadn't, but her voice was gone for about a week or so.
When she found out I was going to have a CT scan, Daisy told me, "Don't worry, Beam. It will feel like you peed your pants, but you didn't. It will just feel like it."
I said to the tech who was mopping up the dye, "I feel all warm, like I just peed myself."
"You do?" the tech asked. Then she said, "Okay, let's put you through the scanner fast. Maybe there will be enough dye in there to get a good picture."
She left and, again, I followed the directions of the disembodied voice. At the end, though, I let out my breath too soon. I couldn't hold it any longer. I didn't know if it was from the laughing or from nerves. As it turned out, my exhaling didn't matter. They got the pictures they needed.
The tech helped me off the narrow scanner's bed, and I was escorted to another waiting room to await an ultrasound on my left breast. The room was dim, with an overhead light on low. It was such a contrast from the CT scan room, which was florescent and bright. I put on one of those gowns with the opening in the back and curled up on the bed under a blanket. The lighting in the ultrasound room was so low that I considered falling asleep.
I closed my eyes and saw two vague images of very tall beings with overly large wings hovering above the bed. They emitted a sense of white. A sense of comfort rushed over me; whether it was my imagination or real insight into the spiritual world didn't matter much. I wasn't alone.
As I focused on them, I felt their wings flapping slowly. Still comforted, I realized their heads were in the ceiling, looking into the room above me.
I thought about a bed and a surgery going on above me: doctors in blue face masks and gloves under bright lights and sterile blue sheets of paper fabric. I prayed for the surgery I imagined and the patient I couldn't see.
As the giant beings moved their wings with more power, I thought I felt the air currents in the room change. A warm air moved in. When the flapping stopped, the room's air turned cool once again.
Eventually, the ultrasound tech came in and sat down next to me. She was white and older. I felt comfortable with her instantly because she presented as experienced and confident. She picked up the ultrasound wand and told me, "This is going to be cold." She held up the ultrasound gel and with her eyes on the screen, she lifted the blanket and gown. With only a partial glance at my chest, she squeezed the freezing substance all over my left breast, and I shivered involuntarily.
"Sorry," she said.
"You don't have heated gel?" I asked.
"I wish. I feel so bad when I have to freeze patients." She moved the wand around my chest but couldn't locate the lump. "Can you point out where it is to me?" she asked.
"Sure," I said. I ran my hand over my breast and found it toward the southeast quadrant.
The tech took the wand and tried to find the lump on the computer screen, but it wouldn't appear on the screen. She asked if she could find the lump with her fingers. She hoped that once she felt it, she could pull it up on the screen.
"Go for it," I said.
Again, the lump didn't show.
She took images of what she couldn't see and said, "I'm going to go talk to the radiologist."
She left me in the room by myself and I looked around for what I had decided were angels, but I was no longer quiet enough to sense them.
The ultrasound tech eventually returned with the radiologist, who looked at the screen as she moved the ultrasound wand around. The radiologist said, "It's confusing. We are sending you to get a mammogram, just to be certain that nothing else is going on there."
"Okay," I replied. "So, what you are saying is that you don't think it's anything, but you aren't certain."
"Exactly," she said and left, allowing me to wipe off the ultrasound goo and get back into my clothes.
My friend Jean was married to Aubrey, and they were both a little younger than my parents but only by a year or two. They had been Christians since the 1970s. Aubrey and Jean were dear friends who gave me advice and were a sounding board for most of the decisions I had to make. They followed my belief system and shared my values, unlike my parents, who came at the world differently than I did.
My mother was a Reform Jew who took off from work for the High Holy Days in Judaism and celebrated Hanukkah. She never went to synagogue anymore, even though she lived less than three miles from the Reform Synagogue, which her parents had helped found. My father converted to Judaism to marry my mom, but when they divorced, he ended his commitment to organized religion. He said he wanted to put together a pamphlet on his secular humanistic beliefs, so that when the Jehovah's Witnesses came to the door, he could give them his reading material in exchange for theirs.
I met Jean and Aubrey at the local Vineyard Church, where I was also a member. It had become a tradition that we would go to lunch after church: the Olive Garden, Applebee's, Red Robin. Their only son called me the sister he never wanted.
The Sunday after my CT scan, April 11, we were at an Irish pub. In our company weren't just me, Aubrey, and Jean, but Aubrey and Jean's son and his wife, and their granddaughter, who was a strong softball player, along with another couple who were Aubrey and Jean's old friends. We'd been at her softball game earlier that afternoon. We had ordered the crab and artichoke dip and hot roast beef sandwiches.
In the middle of dinner, my phone rang. I looked at the caller ID and didn't recognize the number. Therefore, I let the call go to voicemail. I was in a noisy pub with people; I never answer my phone when I am eating with others, unless it is absolutely necessary. When the meal was over, I hopped into Aubrey's truck and listened to the voicemail.
It was from a doctor at the medical center, the place that had sent me for the ultrasound and CT scan. A doctor I had never met was calling at 5:30 on a Sunday evening. This could not be good.
Aubrey said, "I'm sure it's all going to be okay."
I called the number the doctor left and got the answering service, which said the doctor would call me back in ten minutes, and if he didn't to call them back.
Ten minutes was enough time to get home and settle in on Jean and Aubrey's back deck. Only moments after I sat down, my phone rang again.
The doctor introduced himself and then gave the results of my tests. He said, "The ultrasound looks okay, but the radiologist recommends that you get a mammogram just to be sure."
"Okay," I said. What else could I say? The radiologist had already told me that.
The doctor continued, "The doctor you see here at medical center is only part-time. She won't get these results until Tuesday. I want to get started right away."
I was listening carefully when he said, "The CT scan reads that there is a mass that is three by four by point four centimeters directly under your breastbone. The doctor who read your CT scan thinks it's either a thymoma or lymphoma."
"It's how big?" I asked.
"Three by four by point four centimeters, which means it's long and really thin."
Stunned, I tried to listen more carefully, but I was having a hard time concentrating on his words. I was going over what he said it might be — lymphoma or ... what was the other thing?
"I want to get you an appointment with a surgeon as soon as possible to try to diagnose what we are seeing."
"Okay. What did you say it might be again?"
"Thymoma, cancer of the thymus gland, or lymphoma, cancer of the lymph nodes."
Silence. Lymphoma — that's not good. That's never good, right?
Then he added, "I'm going to have our scheduler make an appointment for a surgeon at a local hospital so that you can meet with them to discuss the next steps."
"Okay."
"If you have any further questions, feel free to call me back."
"Okay."
I hung up the phone.
The sky was a gray-purple, and Aubrey and Jean were sitting in Adirondack chairs in the fading light. Their jackets were blurring into the woods behind them. Night was erasing sharp lines and it was beginning to cool.
"He thinks I have one of two possible types of cancer," I said.
"What types?" Aubrey said.
"I don't know. Lymphoma or something else, a cancer of some gland."
"What did he say?" Jean asked.
Looking back on it, as the doctor and I talked, I should have put him on speakerphone so that Jean and Aubrey could have heard him for themselves. Then all of us could have listened at once and maybe heard all of the pieces together. Instead, my numb brain wasn't able to process much of what was said.
I told Jean, "He said he's going to get some surgeon at the local trauma hospital."
Birds chirped. The peepers in the pond out back were starting to sing.
"You going to call your mom?" Jean asked.
I shrugged. Yes. Of course. But I knew my mom. She was going to ask all these questions, and I just didn't know the answers. I decided to procrastinate by watching a reality TV contest show and call my parental units after it was over. My parents had divorced when I was two, which meant I had to report any news twice.
I called my dad and stepmom first and did something I have never done before or since: I asked to be put on speakerphone.
"I just got a call from the doctor about the CT scan on Friday. I did tell you I was getting a CT scan, right?"
"Right," Dad said.
(Continues...)
Excerpted from What the Doctors Don't Tell You by Kimberly Joy Beam. Copyright © 2016 Kimberly Joy Beam. Excerpted by permission of AuthorHouse.
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