Thursday, June 20, 2013
We did it!
We finally nailed down a date for Lily and Jason to fly out here for Clinic Day! That's the day the two of them and Jimmi and I will head to the fertility clinic for a full day of testing and talking and gathering information and figuring out the plan for the transfer of our bun into Lily's oven a few weeks later.
Clinic Day is scheduled for July 11th!!
They'll fly in on the 10th, we'll go to the clinic from 8 AM - 2 PM on the 11th and then I'm planning on getting tickets to a Broadway show, probably Wicked, for that evening. Then they'll fly back on the 12th. Not a long visit, but a very important one! I can't believe it's really happening!
At about 1:30 PM my mom came over to help me clean up a little bit. It's been difficult for me to do a whole lot since my back is still bothering me. "How's the pain today?" she asked as she put down her bag and walked over the the chair where I was sitting. "It hurts," I whined. "And the doctor is really pissing me off. I called yesterday and they told me they received the DVD of my CT scan from Dr. L on Tuesday and they were just waiting for their radiologist to compare it to the MRI they took. It's Thursday and I still haven't heard anything!" I grabbed the phone and called the sports medicine office and asked for the physician's assistant I'd been dealing with. He picked up the call, "Hi Suzanne. I haven't forgotten about you, but unfortunately, the head radiologist still hasn't been able to compare the two scans yet. I promise I'll get back to you today." Before I could stop it from escaping my lips, the question flew out, "Why is it taking so long? Does he think the cancer is back?" The PA paused the uncomfortable pause of someone who isn't quite prepared to answer a particular question, "Well, he wasn't sure from the MRI which is why he wanted to look at the CT scan to compare the films. I didn't call you because I didn't want to scare you before I had a definite answer." I guess my mom saw my face fall because she came closer and sat down on the stairs next to me. The PA finished with, "I'll call you as soon as I get the report, ok?"
I hung up the phone and forced myself to breathe. My mom asked, "What did he say?" I couldn't answer her.
All I could do was breathe.
She didn't ask me again. She let me take the time I needed to process what I'd heard and then my eyes blurred with tears and the words came out, "They think it might be cancer."
Jimmi walked in as the horrific sentence was still hanging in the air. "What?" he asked. "I'm not doing it again," I insisted. "I can't go through that again!" My mom, always the calming force, replied, "Calm down. Don't worry unless there's a reason to worry. Maybe you should call Nurse L." The same thought had already crossed my mind and my finger frantically dialed the number to my oncologist's office. Nurse L, my favorite from the start, called me back very quickly, "What's up?" she asked. I blurted out the details of my conversation with the PA and she said, "What? Who said that? Why didn't they send US the MRI DVD?" She sounded angry and very protective of my fragile mental health, "I'm reading the report from the CT scan we did here last week and it says 'No suspicious activity. No evidence of disease.' The only new appearance is the radiation damage." I broke in, "But how can that be? Can radiation damage show up two years after completing radiation?" She was strong in her words, "Oh, yeah. Definitely. Radiation is the gift that keeps on giving." But I wasn't convinced, "Why is this happening? We're supposed to be getting ready to have a baby!" My voice cracked and the sobbing began, "I know," she said sympathetically. "They're scaring me! I can't do it again! I can't!" I could've sworn I heard Nurse L's voice shaking as well, "I know. I know you can't. Can I talk to them? What's their number? I'm gonna get this figured out." I gave her the information she requested and she hung up after promising, "I'll call you right back."
I just sat there. I couldn't muster up the strength to do anything else. My mom and Jimmi tried to convince me of the many other possibilities that could be causing pain and a new spot on my scans, but I wasn't convinced.
Nurse L called right back, "Ok, they're sending us the MRI and we're gonna have our radiologists look at it. They're also calling me back once they have the final report from the MRI on their end." I asked, "Is it possible your radiologists made a mistake? Could it be cancer?" She tried to put me at ease, "Look, anything is possible, but based on your history, any radiologist who doesn't know your entire situation is going to assume the possibility of metastatic disease. They all do it. Just sit tight and I'll let you know what I find out."
In the meantime, nothing was getting cleaned up at my house. That ship had sailed away taking the hope I'd newly found along with it. And then I saw the e-mail from Tara:
We're all set for Clinic Day on July 11th! Please see the flight options for Lily and Jason below and let me know which one works best with your schedule.
Awesome. Should I tell her to hold off on booking anything because I may have to cancel the whole thing? Should I pretend nothing's wrong? I chose option #2 and picked the flights I thought were best. She responded that she'd check with Lily and Jason and get back to me. Great. Whoopee! I should've be doing cartwheels of joy at that moment but all I could do was think about the possibility of losing my hair again. Sounds petty, right? Well, it's not. When I lost my hair my dignity was lost with it. I hated everything about being bald and then having short hair. I was not a Bald is Beautiful warrior who proudly paraded her smooth and shiny scalp as a symbol of the battle she was fighting. Nope. I was the one who kept covered and hid from the world. I was the one who stayed on my corner of the couch and hoped no one would want to visit me. I wasn't me at all. I was just a cancer patient.
I'm not doing that again. I can't.
I had to run out for a few minutes. I left my mom at the house and asked her to please answer the phone. I didn't know if the sports medicine office would tell her anything, but I knew Nurse L would. I ran my quick errands and just as I'd finished paying for my Dunkin Donuts iced coffee, my phone rang. I recognized the sports doctor's number, contemplated not answering the call, but quickly changed my mind. "Hi Suzanne," it was the doctor himself, not the PA. Is that a bad sign? "So, we got the results of your MRI. Sorry it took so long but the radiologist really wanted to see the CT scan first. So, he definitely sees the same area of concern that your oncologist's office says is radiation damage but he's very non-commital." A non-commital man? No way! "He said it COULD be that, but it's also possible it could be metastatic disease."
Metastatic disease: A fancy term for your cancer has spread. Or, more simply, you're fucked.
He continued, "We'd like to set you up for a bone scan tomorrow to look more closely and get to the bottom of this. If that scan is inconclusive as well, we may have to go in for a biopsy, but we'll cross that bridge if we get to it." I guess he could hear the fear in my voice so he threw in, "I'm not a betting man, but I'd say you'll be just fine." Oh, gee thanks, Doc. You're telling me the radiologist thinks I might have cancer again and you don't truly understand the severity of the type of cancer we'd be dealing with, but you think I'll be fine? Why are we even going through this little exercise? If you think I'll be fine, let's just leave it at that and let me get on with my life? "So my PA will call you after he calls your insurance company and we'll set up the bone scan." Ok, "And when will I have the results." He said, "Hmmm...Well, if we get you in tomorrow, I'd say the earliest we would know anything would be Monday. Just try not to think about it and enjoy your weekend."
You're fucking kidding me, right?
I drove home with a knot in my stomach the size of Texas. I recapped my history in my head. Diagnosed April 2011, hysterectomy June 2011, chemo and radiation July 2011 - September 2011, clear scans until April 2013. It's only been two months since April. I wasn't even supposed to have my next scan until July. Can things really change in two months? Yup. Small Cell Neuroendocrine Carcinoma is a nasty bitch and she plays dirty. Those little cells can hide in there and pop up whenever they need a little excitement. I thought I'd made it two years cancer-free and now I'm told I might have to start all over again. The ringing phone snapped me out of my thoughts. "Hi Suzanne it's Dr. L's office. He wants you to come in for a PET scan tomorrow at eleven." Wait, what? "Oh. I thought I was going for a bone scan." She responded, "No, we don't do that. He wants you to have a PET scan." I was confused, "I thought I was having a bone scan at the sports medicine office?" She clearly had no idea what I was talking about, "I don't know. Is eleven ok?" I agreed and figured I'd call Nurse L for clarification after the scheduler hung up. "Ok, be here fifteen minutes before the scan and don't eat anything for six hours before you get here."
I didn't have a chance to call Nurse L back because my mom met me at the door shaking her head, "I just got off the phone with Nurse L. She seemed very annoyed." Maybe she could tell me what the Hell was going on, "Yeah, they just called me in for a PET scan. I thought I was having a bone scan." My mom went on, "Yes, Nurse L spoke to the sports doctor and he told her they were sending you for a bone scan. She told Dr. L and he got angry because they don't even do bone scans anymore. He wants you to do the PET scan so they can get to the bottom of this." Made sense, "Then she said that since Dr. L is in the New Jersey office tomorrow he'll be able to see you right away and tell you what's going on." That was good news. "So I won't have to wait until Monday?" She shook her head, "I'm telling you, Nurse L did not sound happy with the way the other doctor's office is handling this." Yeah, neither am I.
And then my mind started buzzing with its daily, crazy thoughts. What if this is all happening for a reason? What if the Universe knows the cancer is back and sent me to the second doctor because the first radiologist missed it? What if all of these events are happening to lead me to a re-diagnosis? I mean, seriously. Think about it. I was working with the first surrogacy agency for months and rejected every possible candidate they sent me. I switched agencies and within hours we were matched with exactly the right person for us. I truly believe that was a series of events destined to lead us to Lily. The timing was right and it all fell into place. Maybe that's what's happening here?
Anyway...a few minutes after the crazies had stopped yapping in my ear I received an e-mail from Tara with the final flight plans for Lily and Jason's trip on July 10-12. "Should I book it?" she asked. Shit. I had to tell her. I typed:
Do you think we can hold off for 24 hours? The pain in my back is still there and I'm going for a PET scan tomorrow to hopefully find out what's going on.
I hate that everyone probably thinks I'm a hypochondriac who complains constantly. I hate that I feel like one of those annoying people on Facebook who is constantly whining about imaginary problems that I'd give anything to have over the hand I've been dealt.
I'm sure 24 hours won't make a difference in booking the flights. Sending positive vibes.
Ok, that's done. And now all I can do is continue the waiting game I've become so accustomed to. Tomorrow I'll be sequestered into a room and injected with a highly radioactive dye so I can have yet another type of scan that will hopefully bring me some answers. I'm not a religious person, but...
Please pray they're good ones.