Sunday, April 13, 2014

Diagnosis Day - April 14, 2011…Scan Day - April 11, 2014

Three years ago, almost to the day, I heard the words that would change my life forever.

"There was some cancer there…"

From my gynecologist's nonchalant choice of phrasing, it sounded as if I had a spot of mustard on the corner of my mouth, left over from that afternoon's turkey sandwich. One swipe of a moistened napkin and I'd be good to go! But, no such luck. The rare and aggressive form of "some cancer" left me without a uterus, fallopian tubes, ovaries, and, for awhile, hair. I was told not to Google Small Cell Neuroendocrine Carcinoma of the Cervix, and I obliged…for a little while. After piecing together small bits of the seriousness of my disease from a Facebook support group consisting of the few others around the world, still alive, with the same ailment, I finally learned the horrifying facts. Even if I completed my surgery, four rounds of intensive chemotherapy and 28 rounds of brutal pelvic radiation, the likelihood that the cancer would come back, take over my major organs and kill me in the next five years would be 85%. 

I probably wouldn't play those odds at a casino. 

But, here I am, still breathing, living in three month intervals from CT scan to CT scan. It's not the most relaxing way to live but it's my new normal. A few times, my gynecological oncologist thought about moving my scans to every six months, but he quickly rescinded his suggestion and put the orders in for his office to keep up the 90 day schedule. Clearly I'm not the only one who believes this beast could return at any time and he wants to keep right on top of it if it does. But I know just as well as he does, if the demon comes back, I'd be in for a fight that I may not win a second time.

My CT scan, which covers my chest, abdomen and pelvis, was scheduled for March 21, 2014, but Dr. L's office called to move it to April 11, 2014 because he was going to be out of town. Knowing I'd have to wait an extra three weeks turned my stomach in knots and I didn't know if I'd find enough to keep my mind occupied so I wouldn't go absolutely crazy during that time. Little did I know Jimmi would be in and out of the hospital for the last four weeks, which really helped to divert some of my worrying. Thankfully, he was released on Thursday and seems to be doing much better. So the stress turned back to my appointment the following day.

Jimmi and I headed over to the cancer center an hour before my scheduled time because I needed to drink the sticky sweet contrast dye before the test. My mom was just getting out of her car when we pulled into the lot and the memories of the three of us walking in and out of that building almost every day for four months were immediately triggered. The smell of the foyer stopped me in my tracks as I swallowed hard to keep from gagging. I stepped into the familiar lobby and was greeted with a wave and a smile from the friendly receptionist, whose name I've never managed to ask in the last three years. "How are you?" she beamed from behind her desk. "I guess I'll find out," I replied, as I do every three months. We walked up one flight of stairs to the radiology department and I checked in and waited for the clipboard with the paperwork I'm asked to fill out each time I visit. "You can keep the information about the test and the contrast dye," I said. "I know it all by now." I took a pen and went to sit with my mom and Jimmi in the waiting area. After I'd filled out the one sheet asking if I had any allergies, if I'd ever had a CT scan with contrast before, and what medications I was currently taking, I flipped the page and was surprised the second one I see each time wasn't there. "No way!" I exclaimed with joy. "They didn't give me the 'Are you pregnant?' sheet this time! Maybe they finally marked it in my chart that it's physically impossible to get pregnant without a uterus." After three years of complaining to the people at the desk that I shouldn't have to answer that question every time since the answer will never ever change, they finally listened! I walked back up to hand in my completed questionnaire and the receptionist said, "Wait right there a second. I forgot to give you the other sheet." Seriously? "Is it the 'Are you pregnant?' one?" I asked and the man nodded with a smile. "It's only the one question. It won't take long," he said, thinking that would make things better. I wasn't in the mood to ask for my chart to be marked "she will NEVER be pregnant" again, so I checked the box next to "I am sure I'm not pregnant" and went on with my life. 

I heard my name being called a few minutes after I sat down and I raised my hand and announced, "here!" as if the teacher was taking attendance at school. The tech brought over the dreaded drink with my named typed nicely on a printed label, shook it, removed the top, and placed it in front of me with a straw. "It looks so dark," I commented on the color that was usually a watery red but now appeared a deep scarlet. "Yeah, we changed the flavoring. It's still raspberry but we use a different mix. People say it's not as sweet," she said. I sure hoped the "people" were right. I brought the straw to my lips and sucked in the first taste of the contrast dye. My face cringed from the sugary fruit punch that I wouldn't drink voluntarily if it was the last liquid on Earth, and I cursed the "people" who had gotten my hopes up about the toned-down flavor. "Let me try it," said Jimmi, holding out his hand. I gave him the bottle and he took a swig. "It's not that bad!" he insisted. I shot him a dirty look, "You had one sip. I have to drink three quarters of the bottle!" And the bottle probably holds a half gallon of liquid.

An hour goes by very slowly in a cancer hospital, whether you're waiting for a test or results of one. My mom tried to keep my mind off my reason for being there by talking about absolutely anything else, but it was no use. Each time another bald, sickly or mask-wearing patient staggered by I was shot right back into the world of cancer, and I wanted to be anywhere but there. Soon, a couple entered the waiting room. They were probably in their 50s and, while she dressed as any other woman of her age, her husband was donning a rock and roll t-shirt and sweatpants. He joked loudly with the man who'd escorted him to the seating area and I could tell he was the type to make any situation seem funny and light, though we all knew this one wasn't. The man commented on my tasty drink and, as the conversation ensued, we found out he was there for a PET scan. "Non-hodgekins lymphoma," his wife explained. "He was clear for thirteen years and it just came back." Her words hit me like a bullet to the chest. Thirteen years? Here I was, hoping for three, assuming if I get to five I'd be in the clear. But, no. This man was a harsh reminder that this disease can trick you and wait for you to feel safe before coming back to knock you right on your ass. 

That's when I saw a very familiar family enter the room. My parents have known them for at least 25 years and I went to school with their daughter. "Mom, look," I pointed them out to her just as they turned and spotted us. "Oh, hi!" said the woman, trying to force a smile. I couldn't help but wonder which one of them was the patient. Then she looked at me, knowing my history, and said, "You look great. Really great." I thanked her and said, "Not exactly the place you want to bump into people you know." Within a few minutes we found out it was her husband who had cancer, though I didn't ask what kind. The two of them and their daughter seemed completely overwhelmed with fear, understandably. When they finally excused themselves to go fill out paperwork the wife, once again, said to me, "You look great. Really great." I thanked her before getting back to my fruit punch.

And then it was my turn. I followed the faceless nurse into small room with a green chair and a sink; the same one I see in my nightmares. I sat down, spelled my name, told her my date of birth, confirmed I was not wearing a bra with an underwire and assured her I was 100% sure I was not pregnant, then she asked, "Which arm is better for your IV?" The IV would be used to shoot another type of contrast dye into my vein halfway through the scan. "My veins are terrible," I said, thinking I really need to make a recording of this speech. "I have one good one in my right arm, but it has a lot of scar tissue from overuse." I swear, every three months I relive the exact same scenario, over and over again. It's like the movie, Groundhog Day. She was able to find a vein in my left arm and started some fluids to get me hydrated before leaving me alone to wait for the radiology tech to come get me. I listened to the sounds of the CT machine across the hall, swirling around its current victim. Then the room went silent before the voices wished the man good luck and sent him on his way. "Who do we have next?" I overheard the tech ask from the scan room. "Suzanne Kane," someone answered. They obviously had no idea my bionic ears were tuned into their conversation when the tech spoke in an announcer's voice, "Big. Daddy. Kane!" I shook my head and debated whether or not to mention it when he came out a minute later, but I definitely wasn't in the mood for a joke and a giggle.

The tech gave me instructions about getting up onto the table with my head on the pillow and blah, blah, blah. I knew the drill. He covered me with a sheet so I could pull my jeans down to my knees so the button and zipper wouldn't affect the pictures then he left the room to start the test. I lifted my arms above my head, closed my eyes and waited for the table to move me slowly into the tube of misery. Here we go. I thought while simultaneously praying to God for no evidence of disease. "Breathe in!" commanded the recorded voice I knew so well. "Hold your breath!" The table shifted again. "Breathe!" One more time through that little exercise and I was moved out of the black hole to wait for my injection. The nurse came in and squeezed my hand sympathetically. "How are you doing?" she asked. "I guess I'll find out," I answered for the second time that day. "It'll be fine!" she said with that positive tone anyone who's never had cancer tends to use. "It needs to be fine," I insisted. "I'm having a baby next month." She was speechless as she stared at my flat stomach underneath the sheet. "Not me, exactly," I explained. "We have a gestational carrier in Minnesota." She was so interested in what I was saying that I wasn't sure she even remembered why she was in the room until I felt a warm sensation all over my body that told me the dye was running through my veins. "Good luck with everything," she said then she hurried out before the scan began again. 

"Breathe in! Hold your breath! Breathe!" 

Three more pictures were taken before the table backed out and a female tech came to unhook my IV. "I just heard you're having a baby with a gestational carrier!" she said with genuine excitement. "That's so amazing!" I nodded and made some sort of comment about needing the test results to be ok before I'll allow myself to get too excited. "I know you're going to be ok," she said. "If I had champagne, I'd toast with you right now. To new beginnings!" I didn't want to allow myself to get my hopes up because I knew she wasn't a radiologist. She doesn't write the reports, she just takes the pictures. I'd have to wait for the doctor.

I collected Jimmi and my mom and walked down one flight to check in at Dr. L's office. The waiting room was so full there were people spilling out into the hall. "Are you having a party?" I asked the receptionist who cracked a slight smile and told me to have a seat. I knew I had a little bit of time so I took a detour to the ladies room where I ran into our family friend again. She seemed surprised to see me as she exited the stall and, once again, the only words she spoke to me were, "You look great. Really great." At that point I figured she was in shock over her husband's diagnosis and just didn't have the strength to say anything more. Either that or two and a half years of new hair growth is really working for me! When I got back to the waiting room my second favorite nurse was waiting for me. "Hi!" she gushed. "How much longer?" I knew exactly what she meant. "Five weeks," I told her. She clapped her hands and double checked, "Girl, right?" I confirmed her thoughts as she led us to an exam room. "I really need everything to be ok," I said for the billionth time that day. "It will be! I know it." She took my vitals and told me to get naked from the waist down. As she opened the door to leave she almost walked right into my favorite nurse. "And here's Nurse L," she said. Nurse L is the one I'm closest to and the one I call with all my questions. She calms me, she answers me, she listens to me and I can tell she truly cares about me. "When's the baby coming?" she beamed upon entering. "Five weeks," I said again. "Well," she said, holding a report up in her hand. "Here's our gift to you." I was hoping she meant what I thought she meant and, before I could ask, she let me off the hook. "Everything looks good! Scan is clear!" Tears lined the rims of my mom's eyes and Jimmi's smile matched mine. "Really?" I asked. "Yes! But don't tell Dr. L I told you. He likes to be the one to give the good news." she said with a wink. "Now let's hurry up and have that baby. I feel like she's been pregnant FOREVER!"

Dr. L joined us about fifteen minutes later. "Scan looks good," he said. "But I'm sure you already knew that, right?" I tried to act surprised but he knew better. He got into position for my internal exam, which I was dreading. For most women, a pelvic exam is no big deal. In, out, done. Well, not for a woman who's had radiation damage to that area. For us, as the speculum opens, it feels like we're being torn apart. And, without regular…ummm…exercise to the girly parts, everything starts to shrink, making it difficult to get anything in there. That's why a dilator is prescribed for us, the lucky members of the vaginal stenosis club. It's basically a medical dildo used to keep everything happy down there. But I fucking hate that thing! It's hard plastic, it's not fun and it's a constant reminder of cancer. Whenever possible, I take part in the real thing. But, with Jimmi in and out of the hospital for the last month, it hasn't really been very hot and heavy at my house lately. "Before you get in there I want to warn you it's gonna be really tight. Please don't hurt me!" He gave me a puzzled look before I explained Jimmi's bad luck. "What about the dilator?" he asked. "I fucking HATE that thing!" I said. He finished the exam, told me everything looked good then he looked down at the blood on his glove and said, "You need to use that dilator. It's only gonna get worse." 

Dr. L glanced at my chart and marveled over the fact that it's been three years since diagnosis. I know he's proud of himself for saving my life. We both know I'm a walking miracle. He told me he'd see me in three months, wished us luck with the baby then left the room. I turned to Nurse L, "Will he move me to six months soon?" She shook her head, "No. You need to come here every three months. Six is too long." There will never be a safety zone for me. Then she added, "You know, you don't have to use the dilator." My expression changed. "Grab one of your girlfriends and hit the sex shop! Get yourself a toy! You might even be able to push it through insurance." The thought of filling out a form to be reimbursed for a JackRabbit made me giggle. I set up my next appointment for July 18th and my mom, Jimmi and I left the cancer center. When we got outside my mom turned to me, breathed a sigh of relief and said...

"Ok! Bring on that baby!"


  1. This brings tears of joy! I am so happy and thankful. Lots of love and well wishing! Xoxo

  2. I came across your blog via facebook. I too had a rare cancer. I was on three month scans for four years. So reading this post was similar to the ones that have gone through my mind at my own visits. While our cancers are no where near the same, I felt a little victory in each good rescan. Congrats on your baby! Its an awesome reminder! :) Take care!