Friday, June 21, 2013
It was a beautiful day for a drive with the top down on the convertible. The wind was blowing through my 19 month-old hair and the sun was warming my cheeks. I was singing along with the 80s hair bands blasting over the speakers and my mind was free from all worries.
Wait. Scratch that last part.
Let's be realistic. I was terrified as I took the dreaded 30 minute drive to the cancer hospital to hopefully find out what has been causing the pain in my back. So far the CT scan showed what appeared to be new radiation damage (two years later) and the MRI was inconclusive in confirming the so-called radiation damage or metastatic cancer. Today I was scheduled for a PET scan as the tie-breaker.
If you don't know the differences between the three types of scans, you're not alone. Truthfully, I'm pretty clueless myself. The CT scan involves drinking contrast, having two pictures taken of my insides, being injected with another contrast dye and having three more pictures taken of my insides. The MRI doesn't involve any contrast. It's another scan of the insides that takes much longer than the CT scan and it's obnoxiously loud and annoying inside. The PET scan also requires drinking the contrast but then I'm injected with a radioactive tracer that will light up any areas of suspicious activity or "hot spots" with varying degrees of heat. The degrees are called SUV numbers and I think they go from 0 (no activity) to 15. Generally they say anything at or above a 2.5 points to a malignancy...but not necessarily. Until today I'd only had one PET scan right after I was first diagnosed so I'm not very versed on the ins and outs of the test. The information I just typed was found on Google AFTER I got home from the cancer center today.
I parked the car, hobbled into the center and took the excruciating walk up the stairs. Valet parking and an elevator probably would've been better choices, but I was too stubborn to take the easy way out. I checked in and found my mom in the waiting room. "You gave your car to the valet, right" I shook my head and sunk down into the plush chair. She shot me the mom look, "And you wonder why your back is still hurting? I've told you not to push it!" Yes, yes. I know. I hung my head in shame, opened the pamphlet I was given on the PET scan and began to read about the test. "Wow. I'm gonna be back there a long time," I said to my mom. "I'll have to sit there for an hour after they inject me to let the tracer go through my body and then the scan will take another forty-five minutes." Unfortunately, because the tracer is actually hazardous material, I'd have to leave my mom in the waiting room and suffer through the hour of tracer-soaking in solitude.
"Ms. Kane?" I turned as I heard my name being called, "That's me." I stood up, bid farewell to my cheerleader and followed the tech, who clearly hadn't smiled in years. Though I'd been to the same department every three months for almost two years for my follow-up scans, this time I had to go down a different hallway. My comfortable and familiar CT scan was to the left, but the PET scan was straight ahead. Down the long hallway we went, only stopping to grab a bottle of the same disgustingly sweet contrast drink they use for CT scans. Then we continued, passing door after door with posted danger signs that read, "Radioactive Materials Area." I felt my eyes start to sting but I quickly nipped the tears in the bud. "This way," said my less than personable host as he led me through one of the doors with the aforementioned sign. I got on the scale and told the tech my height. He then brought me to a smaller room with a reclining chair, a sink, a Sharps container and a bunch of drawers, one labeled, "IV starter kits." He motioned me into the chair and, without an ounce of tenderness or empathy announced, "A nurse will be here in a minute to check your blood sugar and start your IV. Then you'll have to start drinking the contrast and I'll come back to give you the radioactive tracer. After the injection you'll need to wait an hour and then I'll come back and take you to have your test. You can play on your phone or sleep or whatever, but make sure you drink all of the contrast." Then he left the room. They might as well have sent a robot to do his job. At least they could've programmed it to have a little compassion.
I scanned the tiny room that looked like all the other tiny rooms I've been forced to endure over the last two years. Then I saw the soap and a wave of nausea swept over my body. Yes, soap. Just plain old Dial liquid hand soap. It's the same soap they have in all the bathrooms at the center, including the chemo suite. The smell of that soap brings back all of my memories of chemotherapy, and I promise you, not one of them is good. One whiff of that damned soap and I want to pray to the porcelain God.
Then I heard footsteps. Footsteps are a sound most people don't think too much about. But at a cancer center, footsteps mean a nurse coming to stick you or a doctor coming to give you life or death news. I don't like footsteps.
"Hi Suzanne. I'm here to check your blood sugar and start your IV. You haven't eaten in the last six hours, right?" I figured the answer to the nurse's question was pretty obvious from the embarrassing rumbles coming from my stomach, but I shook my head anyway. She cleaned my left middle finger with an alcohol swab then wiped it dry. "A little pinch," she said as the tiny needle stuck through my skin and she squeezed a drop of blood onto the test strip. I guess I passed because she immediately began setting up shop on the table next to my chair. All of the necessary items for my IV were unwrapped and ready and she went to work finding a vein. I turned my head so I didn't have to watch but I knew everything was in place when I tasted the saline she'd shot through the IV. And then she was gone.
Oh, good! Mr. Happy is back! "Ok, now you can start drinking," he said as he shoved the contrast in front of me. I'll be back in fifteen minutes to give you the shot."When he left I texted my mom to let her know what was going on in the land of quarantine. Then, without warning, the dam broke and the tears started to fall. "I want my Mommy!" I texted like a 6 year-old. "I'm right here waiting for you," she wrote back. I hate this. I hate this so, so much.
I played my turns on Words With Friends and Scrabble and What's the Phrase. I checked Facebook and texted a bit until I heard the damn footsteps again. The tech from Hell arrived carrying the special lead box that held the dangerous liquid that would be injected into my body. I couldn't really see what he was doing since his body was blocking the setup, but I feel like the process was much more dramatic the last time I had a PET scan. When he finally turned toward me, he was holding the shot, which was encapsulated in what I assumed to be lead, and heading right for my IV. Without explanation or any words at all, he hooked the syringe up the the IV, pushed the plunger and emptied it all into my arm. He followed it with a chaser of saline and said, "Ok, you have an hour." Then he looked at the almost full bottle of contrast next to me, pointed and instructed, "Drink!" and headed off to his next victim.
An hour felt like two and I'd swallowed what seemed like gallons of fruity nastiness when Tech Ratched came back just long enough to let me know I'd be going in for the scan in ten minutes so I needed to use the bathroom and finish up the drink now. I quickly did as I was told before he returned, for fear of angering the beast. As promised, he appeared 10 minutes later to get me for the scan. He looked at the bottle of contrast sitting next to me and scolded, "Did you drink more like I told you to?" I wanted to put my tail between my legs and hide. "I did. I drank to the line like you said." He grabbed the bottle for a closer look, nodded his head, and escorted me to the third machine I'd be having a ride through this week. They're all pretty similar on the outside. Long, hard "bed" that moves you into a round coffin-like machine. "Put your head here," he instructed. I did as I was told and felt the pain in my back as it hit the table. Luckily, tech-man put a cushion under my knees which relieved some of the pressure. He then covered me with a blanket and said, "Now pull..." but I finished his sentence, "my pants down to my knees. I know. I'm an old pro." Not even a hint of a smile from this guy! "The test will take twenty-one minutes. Don't move." And he was gone.
Ok, well, 21 minutes sounded a lot better than the 45 minutes I'd read in the pamphlet, but still, that's an awfully long time to stay completely still with your arms over your head. The table started moving and I began my normal exercises to pass the time. I pictured myself on a beach with the smell of salty sea air. That got me through about five minutes. I decided to sing. "Just give me a reason, just a little bit's enough, just a second we're not broken just bent and we can learn to love again!" Five times through that song was all I could handle. I thought about praying but I think God still hates me for leaving the church. Asking Him for favors would probably be a bad idea. Then I remembered NED. My friend, NED. No Evidence of Disease. NED. All I wanted was NED. I started chanting to myself, "NED. NED. NED. NED." I was willing my body to be clean and show No Evidence of Disease on the scan. "NED. NED. NED. NED. NED. NED. NED. NED. NED."
"Ok, you're done. You can head down to Dr. L's office now." He walked me down the hall and opened the door to the waiting room. I thanked him and as I headed out he called after me, "Good luck." Now, normally, most people don't read into "good luck" as a bad thing. But this man had been watching the pictures that were being taken of my insides a few minutes ago. I understand he's not a radiologist, only a technician, but he still sees what's happening on the screen. I'm sure he can see if something lights up, whether he knows what it is or not. Why was he wishing me good luck? Am I going to need it?
Ah, Crazy Suzanne has entered the building!
I limped over to where my mom was sitting and she announced, "I brought you a Nutella to Go as a surprise!" Just one more reason my mom is the best. I plowed through the hazelnutty, chocolatey goodness and rushed my mom out of her seat so we could hurry down to Dr. L's office for the results of the scan. Since I was being squeezed in, I assumed we'd be waiting awhile, but the nurse came to get us pretty quickly. "How are you?" she asked with all the smiles I'd been missing upstairs. "I guess I'll find out in a few minutes," I replied. Before she'd even finished taking my blood pressure, Nurse L burst into the room announcing, "He's still waiting for the radiologist to call with the results but I'm not worried. I don't think this is anything. I read the MRI report from the other place and it didn't say anything that made me think we need to worry. It's fine. I know it's fine." Was she trying to convince me or herself? "It has to be fine," she continued. "I'm already on the verge of tears because my son is graduating tonight. We can't hear any bad news." I knew it. She was crying on the phone yesterday when I broke down. I looked around at my female team who've been through it all with me. My two amazing nurses and my SuperMom and I could see the genuine concern on all of their faces. There were other patients to be seen, but they were all in my tiny exam room waiting for the doctor to give me my sentence. And, without warning, the floodgates opened and I started bawling, "I can't do this again! I can't go through it again! We're supposed to have a baby! Why is this happening?" Nurse L went to the door, "Give me her file," she said to the other nurse, "let me find out what's going on."
A few minutes later I heard my doctor's voice down the hall. He was obviously on the phone with the radiologist, but I could only make out a few words. "Yeah, I need the results of her PET. Yeah, she had a crazy MRI the other day so we're trying to figure it out." And that was all. The second nurse let me know that Dr. L had one more patient before me and then he'd be right in.
Footsteps. Getting closer. Coming to the door. Fading away. Gone.
Nope. Not yet.
Five minutes...six minutes...
Footsteps. Getting closer. Coming to the door. Fading away. Gone.
Nope. Not yet.
Ten minutes...eleven minutes...
Footsteps. Getting closer. Coming to the door. Doorknob is moving. Door is opening.
"Hey, how are you?" Dr. L asked with his mildly cocky, yet friendly tone. "You tell me," I urged. "You're fine. You're ok." Why didn't I believe him? "The PET was clear?" I asked for clarification. Just then, Nurse L threw open the door, "What did I miss? Is everything ok?" Dr. L continued, "Well, there is some activity on the scan in the questionable area, but it's nothing obvious." Wait. What? "What does that mean?" I asked. "The area in your back that the other doctor was talking about lit up, but it was only like a two. A two can mean a lot of things. It can mean inflammation or infection or a million other things. At one point they mentioned a fracture. It could be that." I wasn't getting the answer I was looking for. "Can it mean cancer?" He shrugged, "Anything is possible but I'm really not worried. I don't think it's anything." Not good enough. "Whatever it is hurts and it's not getting better," I explained. "The CT scan showed radiation damage, the MRI was inconclusive and suspected possible cancer, the PET is lighting up with 'activity' and we still don't know exactly what it is? How are we gonna find out?" I can't believe we still don't have an answer. "Well, our radiologist needs the MRI from the sports medicine doctor to compare it to the PET to get a better idea of what we're dealing with," he said. You're kidding me. So, let me get this straight. The CT was supposedly clear, but the MRI was inconclusive. The sports medicine radiologist wanted the CT scan DVD from the cancer center to compare it with the MRI, which still didn't give us an answer. Now the PET scan is inconclusive and I need to wait for the MRI DVD to be sent to the cancer center from the sports medicine radiologist for a comparison of those two tests?
"I'm sorry I can't give you the answers you want today, but hopefully I'll be able to tell you something more definitive on Monday. Tuesday the latest."
"What if they still can't tell what it is after comparing these two scans?" I asked, hoping he'd say that was impossible. "Then we might have to wait six weeks and redo the scan." Yeah, ok. I could be dead by then. "Look, I'm really not worried," he insisted. "Remember the biopsy you had a few months ago that came back ok? I told you I wasn't worried about that and it was fine and I was more worried then than I am now." Oh, ok. But I also remember when he wasn't worried about me having Small Cell because the chances were only 3%, but I showed him!
"Small Cell doesn't typically come back like this," he tried again to calm me. "It's not a location it would normally hit and when it comes back it comes back with a vengeance, not like this." Being in a Small Cell support group online has taught me a lot. Maybe too much. I countered his argument with, "I know people who've had it pop up in any place you can imagine." He looked at me and realized I wasn't the girl who didn't Google anymore. "You're right. As I said, anything is possible. I just don't want you to worry because I really think it's ok." I said, "Until I have an answer I'm gonna worry." Then I decided to test out his real level of concern, "I'm supposed to book a flight for our gestational carrier and her husband to fly out here and meet us in a few weeks. Should I book it or wait?" I didn't get the quick response I was looking for. He paused and asked, "If things aren't good are you still gonna go through with the baby thing?" Hell no! I shook my head. He shrugged and said, "Book it. You can always cancel the flight if you need to." Great. Way to keep the fear to a minimum, Doc.
We said our goodbyes and Nurse L gave me a hug. My mom and I walked to our cars where she informed me that she would not be leaving on her trip to Florida the next day. The whole thing was like a deja vu of my original diagnosis and it scared me even more. Then I was planning a wedding and every detail of my life was falling into place. My mom went with me to the doctor and I was told I had cancer and BAM! Everything was smashed to pieces. My mom was leaving for Florida and canceled her trip. Now the baby thing is exactly where we want it to be. I was finally getting some sort of a life back. I was finally happy again. And BAM! Here we go again.
But I'm trying not to worry, like Dr. L said. I texted Lily and told her the answers I didn't get. "Do you want to proceed?" she asked. I ran it by my mom and we made a decision. I responded to the text, "I'm gonna e-mail Tara and tell her to book your flights."
So that's where it stands as of 2:30 AM on Saturday, June 22, 2013. I still don't have any answers, though my mind is convinced the cancer is back. Lily and Jason's flights are booked, on the off chance I actually get a definitive answer of good news on Monday and my parents have canceled their flight to Florida so my mom will be available to rush to my side when, sorry, IF the doctor confirms my walk to the electric chair on Monday.
Oh, Death Row, I fucking hate you.