Left For Dead

Writing my last post brought back memories from the time of my diagnosis that I think I'd tried to forget. The details were fuzzy until I started typing, then they poured out of my mind as if a dam had broken and the words were flooding the computer screen. Every detail, no matter how minute, became clearer and clearer as the sentences spilled out across the page. I could hear everything my gynecologist said to me in his office that fateful day in April of 2011. I could see the look on his face when he gave me the pathology results of my LEEP, "There was some cancer there." My body shuddered at the thoughts and I shook my head to try to make them all go away. 

But I couldn't.

The funny thing is, what bothered me about the memories almost more than the cancer diagnosis itself, is what happened with my trusted doctor of 11 years.

I first met Dr. F in 2000, when I was pregnant with Dylan. Because it was impossible to know which of the doctors in my OB's office would be on call when I went into labor, I was required to meet all of them at least once. I have to admit, my first appointment with Dr. F started out on the wrong foot. He showed up very late and seemed completely distracted and almost annoyed by my questions. I felt as if he wanted to be anywhere else but in that exam room with me at that moment. He tried to apologize for his lack of concentration by explaining that one of his patients had just miscarried in the room next door, but that just made me more upset because, honestly, what pregnant woman wants to hear about someone losing a baby? I refused to see Dr. F again throughout my pregnancy and I just hoped he wouldn't be the one on call when it was time to deliver Dylan.

Thank God, he wasn't!

My water broke on November 18, 2000 at 3:00 AM, three weeks before my due date. I stood in the bathroom staring at the mess on the floor, half in shock and half in denial. "Do you think you should call the doctor now?" my ex-husband asked, obviously wondering if my brain was registering what had happened. I nodded and he handed me the phone. I left a message with the answering service and, almost immediately, the phone rang back. I was thrilled to hear the very familiar, yet very sleepy, voice of my regular gynecologist, who I'd been seeing since my periods got all out of whack when I was 16 years old. "Get yourself together and I'll meet you at the hospital," he instructed calmly. I couldn't believe my luck! My doctor was actually on call and I didn't have to worry about Dr. F anymore!

Or so I thought.

Dylan seemed to be in a hurry to get out of me until I got to the hospital. The crisp, November morning was probably enough to convince him that it was much warmer where he was and it might be best to just hang out in there a little bit longer. Sadly, my OB's shift came to an end and I was still only three centimeters dilated. "You'll be fine," he told me as he made his last round. "Dr. F will be in to see you soon." 

Nooooooo!

I was already on the defensive when Dr. F entered my hospital room to check on my progress. "Hmmm, I'm not liking your contractions," he said. Yeah, well I don't like you! Get out! Send the other guy back! But he didn't leave. In fact, he grabbed a chair and proceeded to sit with me and watch my monitor for the next hour to make sure my contractions and Dylan's heart rate stayed on track. I couldn't just ignore the man in my room, so we chatted while he watched and I realized he wasn't such a bad guy after all. In fact, I was even beginning to like him. By the time he delivered Dylan, what seemed like days later, he had been bumped up to the top of my "Favorite Doctors" list. Maybe it was because he was the one to finally get the damn kid out of me but, whatever the reason, my initial distaste for Dr. F had vanished and I hoped to see him again.

A year went by and a letter arrived from my OB's office explaining that my regular doctor was moving and, if I wanted to stay with his practice, I needed to choose one of the other doctors as my primary. And that's how Dr. F was able to step in and take over as the man in charge of my hooha.

Justin was born in 2003 and, while Dr. F didn't actually deliver him, he was still the go-to guy when it came to my vag. My yearly visits were with him and, after he told me I had HPV, I started seeing him every 6 months. He performed two colposcopies and two biopsies on my cervix between 2009 and 2011, and he was the man under my gown when I had the LEEP to scrape out all the bad cells.

And, finally, Dr. F was the lucky one who got to tell me I had cancer. 

He tried to sound positive, like this monster growing inside of me was weak and I could beat it easily with just a little bit of help. "I'll be with you every step of the way," he promised. "I know it's a lot to take in right now and I'm sure you'll think of questions. I want you to call me if anything comes up and I'll get back to you as soon as I get the message." Then he stood up and gave me a long, emotional hug that I thought was genuine. He let me cry in his arms and he promised, once again, that he would not desert me even though he needed to refer me to a gynecological oncologist to take over my care.

By the time I woke up, the morning after diagnosis, the questions had already started building in my head. It was Easter week and every oncologist I'd called was on vacation and unable to see me until at least 14 days later. I was terrified and I needed someone to tell me what would happen next. I felt alone and I needed answers. Now. I put a call in to Dr. F because I thought he could at least talk me down from the ledge. After all, he sees women with cervical cancer all the time. He'd know what to say to make it better. An hour went by after I'd left my message and my call hadn't been answered. I figured he was seeing patients and I just needed to chill out. He's a doctor and other people need his wisdom, too. Another hour passed and then another. No phone call. Maybe he's waiting until after office hours when he has time to talk to me without interruptions. Before I knew it, it was 10:00 PM and I hadn't heard from Dr. F.

Maybe he didn't get the message?

I woke up early the next morning expecting a phone call and an apology. But I didn't get either. I waited until early afternoon and called the office again. Another message was taken and the promise of a return call was made. The afternoon went by and, still, the phone didn't ring. My fear was turning to anger and my anger was making me incredibly impatient. Why wasn't he calling me back? He promised!

By the time I woke up the next morning I was really pissed off. I called Dr. F's office and asked for an appointment with the man himself. "Is it an emergency?" asked the receptionist. "He's pretty booked up." I started second-guessing myself. Is it an emergency? Hell, yes, it is! "Yes," I answered, without further explanation. But that wasn't good enough for the keeper of his schedule. "What's your emergency?" I tried to come up with something really good. Something she couldn't deny an immediate appointment. But nothing came to mind so I decided on the truth, "He told me I have cancer a few days ago and promised he'd be there to answer any questions. Well, I have questions. I've left two messages for him but he hasn't called back and…" She cut me off, "He's very busy. I'm sure he'll get back to you when he has a free minute." I calmed my voice before I let it out of my mouth, "I need to see the doctor. Now." Somehow, she found an opening in Dr. F's schedule that afternoon and I grabbed it.

I waited in Dr. F's office, ready to pounce as soon as he walked through the door. I tried to remain calm as the heard the footsteps drawing nearer and saw the knob begin to turn. "Hi, Suzanne," he said, looking surprised to see me. "What's up? Have you seen an oncologist yet?" The man was oblivious. "No, everyone's on vacation. I've thought of some questions since you told me about the cancer a few days ago and I…" His face contorted into what looked to be annoyance that I'd actually taken time away from his other patients, who might actually have emergencies, by asking to be squeezed in for a Q&A session. "I told you to call me," he said. "You didn't have to come to the office." I picked my jaw up from the floor where I'd dropped it and steadied my voice enough to say, "I did call you. Twice. You didn't call me back." He fumbled around his desk and found some Post-It Notes stuck to his computer. "Yeah, I just got those messages this morning. Sometimes it takes a few days." He could see by the look in my eyes I was not accepting his excuse. "You know what I'm gonna do?" He asked. "I'm going to give you my cell number. I always have it on me and that way this won't happen again." I took that gesture as a real attempt to get back in my good graces. We spoke for a few minutes and he answered whatever questions he could then instructed me to make another appointment to see him after I'd met with each of the three oncologists I was planning on seeing over the next two weeks.

Exactly fourteen days later, my mom and I sat in Dr. F's office, again, ready to catch him up on all of my meetings. I had just recently heard the words "small cell neuroendocrine carcinoma" for the first time, but none of the oncologists had officially confirmed that diagnosis yet. Dr. F was friendly with Dr. T, the first oncologist I had seen. He was actually the one to mention the possibility of SCCC first, but I knew I wasn't going to choose Dr. T to perform my surgery anyway. He was probably a great doctor but his bedside manner left a lot to be desired. Dr. L, the surgeon I had chosen, was still studying my tissue slides before giving me an official yea or nay on the super scary cancer. Dr. F entered the room powerfully and plopped down into his chair. He wheeled himself around so he was facing me, grabbed a file and asked, "So? What's the plan?" I started to explain, "I saw Dr. T first. I wasn't crazy about him. The next doctor was nice but she can't do the surgery robotically. I think I'm going with Dr. L. They all seem to think we caught it very early and Dr. L said I might only need a larger LEEP unless it's this rare cancer called small cell neu…" He interrupted me, "It IS small cell," he said as if the word of God had been whispered into his ear. "What?" was all I could say. Dr. F continued, "I spoke to Dr. T and he told me it is small cell." I was silent. Apparently Dr. F knew more than I did, at that point, and any hope I'd had of saving my uterus and my hair, for that matter, had just flown out the window with his announcement. "Well," I tried to hold onto the belief that Dr. T had made a mistake. "Dr. L is still looking at the slides and I'm gonna wait and see what he says. I want to try and work it all around my wedding in four months." Dr. F didn't want to hear it. "Small cell is a much more serious diagnosis than we'd originally thought. I wouldn't wait too long to treat it. You should probably just postpone the wedding." I was now holding back tears, "I'm NOT canceling my wedding!" I shrieked, louder than I'd anticipated. "I'm meeting with Dr. L again next week and we'll work it all out." Dr. F stood up and my mom and I followed his lead as he walked us to the door, "After you figure out your treatment plan I want you to call me and let me know. I gave you my cell number, right?" I nodded. "Ok," he continued. "Keep me posted so I know what's going on with you. I promise, it's just a bump in the road." He'd used that phrase a few times since my diagnosis and it couldn't have been more inaccurate.

After Dr. L confirmed small cell neuroendocrine carcinoma of the cervix and had me sign off on the waiver he needed to remove my entire reproductive system, I wasn't really in the mood to discuss it with anyone. I went into a cocoon of depression for a few weeks, which is when I started blogging. Writing was my way of getting all of the information to my friends and family, without actually having to speak to anyone and have the same conversation over and over again. Weeks went by and my surgery date was drawing near. "I should probably call Dr. F," I said to Jimmi. "It's been over a month since he's heard from me. I'm actually surprised he hasn't called me." I checked my phone contacts, found his cell number and tapped "call." After a few rings Dr. F answered, "Hello?" I stuttered, "H-h-i, Dr. F? It's Suzanne." There was silence on the other end of the line. It seemed as if he was trying to remember who Suzanne was. "Oh, hi," he finally placed me. "I was just calling to update you on my treatment plan." And his reply sent chills of anger throughout my body, "Well, it's about time. Truthfully, I thought you would've called me sooner." 

What?

Are you FUCKING kidding me?

You tell me I have cancer and leave me hanging for days even though you know I'm terrified. You then find out I have this super rare and aggressive type of cancer that will probably kill me. You know I don't know where to turn or who to believe. You must also know the treatment for this cancer wouldn't be just a "bump in the road." You must assume I've had more on my plate than I can handle and that a phone call to you wasn't my top priority! If you wanted to be in the loop so badly, or if you cared, as you swore you did, why the HELL didn't you call me? It would've been nice to feel like more than just a chart in your filing cabinet. It would've been nice to feel as if your promises mattered. It would've been nice if you were actually sincere. I finally spoke again, "I'm having a hysterectomy tomorrow and chemo and radiation starts in a month." He replied, "Are you still thinking of getting married in September?" I told him I was. He said, "Ok, well, good luck. I still think you should postpone the wedding and concentrate on your health. Keep me posted."

And that was the last time I spoke to Dr. F. 

But it wasn't the last time his office contacted me. About six months later, when my hair had just started growing back and my wedding ring had a few scratches from two months of daily wear, I received a letter from Dr. F's office:

Dear Suzanne,

It's time for your PAP and well-woman exam. It is very important that you do not miss this very important appointment. Early detection of certain strains of HPV is key in preventing cervical cancer.

I didn't even bother to read the rest. "They really need to update their files," I said to Jimmi as I tossed the paper on the counter for him to read. And then I got angry, "He doesn't know if I'm alive or dead!" Jimmi looked up at me, "Maybe you should call him." And my blood pressure shot up even higher, "I'm not calling him! He promised he'd be there for me! He promised he wouldn't leave me! He promised he'd check up on me! I haven't heard from him since the day before my surgery. How does he know I even made it through treatments? He obviously doesn't care." Jimmi just nodded and shrugged. There was nothing he could say.

I ignored the letter and chose not to give Dr. F the satisfaction of knowing I was still alive. I received another letter from his office, same as the first one, about six months later and I tossed it in the garbage without responding. The letters have now stopped. 

I wonder if they've marked me as "deceased" in their files?

Cervical Cancer is NOT 100% Preventable

Because January is Cervical Cancer Awareness Month, please allow me to take a break from the Baby A play by play to bring you a very important and very serious public service announcement that could save the lives of women you love.

CERVICAL CANCER IS NOT 100% PREVENTABLE. 

ALL CERVICAL CANCER IS NOT CAUSED BY HPV.

CERVICAL CANCER IS NOT ALWAYS TREATABLE.

Are you surprised? 

Most of you know that I was diagnosed with a very rare, highly aggressive form of cervical cancer in April of 2011. After he broke news I questioned my gynecologist, "How did this happen? What caused it?" He looked right into my terrified eyes and said, "HPV. Cervical cancer is always caused by the HPV virus." Of course, my trusted gynecologist, the man who had delivered Dylan in 2000, must have known what he was talking about. He's a doctor, after all. His job is to know this information and pass it on to his patients. Little did I know…

He was wrong.

Two years before my cancer diagnosis I had been told there were abnormal cells, or dysplasia, in my PAP smear. They were following me very closely to make sure the cells didn't become precancerous which, interestingly, they never did. Yes, I had HPV, as most adults in the world do at some point or another, but the dysplasia was mild and nothing sent up a red flag for cancer. I followed up with my gynecologist every six months, as he'd suggested, to keep on top of any changes, but everything stayed mild. Then, at the two-year mark of my first abnormal PAP, the dysplasia showed up as slightly higher risk. My gynecologist performed a biopsy and, in no uncertain terms, assured me, "This is NOT cancer, but I think we should do a procedure to scrape out the abnormal cells and let new ones grow back in their place. That should get rid of the HPV for good." So that's what we did. On April 1, 2011, I had the LEEP procedure. In no way was I prepared for the words I heard on April 14, 2011, "There was some cancer there…" My doctor was so matter-of-fact; like he was telling me there was some mustard on my lip from a sandwich I'd eaten for lunch. "It's just a bump in the road," he continued. "This is an easy cancer. Very slow-growing. Very treatable. They'll probably just have to do a little bit more surgery to get the rest out. Maybe you'll have some radiation, but that might not even be necessary. Don't worry!"

Wrong again.

One month and three oncologists later, I finally chose Dr. L as my surgeon. Sometime during those four weeks, my initial, basic, run-of-the-mill, cervical cancer diagnosis had changed to a much scarier and much less familiar cancer called small cell neuroendocrine carcinoma of the cervix. Dr. L insisted that I should not Google my illness because I wouldn't find any helpful information online. Not enough was known about the disease so I should bring any questions I had right to him. He was very straightforward and easygoing at the same time, and the fact that he couldn't squeeze me into his surgery schedule until June 14th led me to believe we weren't in a race against time. That was ok with me, though, because it gave me a chance to harvest my eggs for future use with a gestational carrier. Who knew that extra six weeks could've killed me?

At the end of May I put 12 embryos on ice and started preparing for my surgery date a few weeks later. My regular gynecologist's original statements of, "Just a bump in the road. Easy cancer. Very treatable," flew out the window as I got ready to say a final farewell to my uterus, fallopian tubes and ovaries. Then, looming on the horizon, was the promise of 4 cycles of chemotherapy, each lasting 3 days, with a two-week break in between. Oh, and on top of that, I would have a bonus 28 rounds of external pelvic radiation. Piece of cake! Did I mention that all of this was happening four months before my wedding?

On June 14, 2011, I walked into the hospital a complete woman and was wheeled out of the operating room, just the shell of one.

The pathology report was the next shocker. What was originally thought to have been stage Ib cancer had actually spread enough in a few short weeks to be classified as stage IIb, with one lymph node showing disease as well. I thought this was a slow-growing cancer?

While recovering from surgery and dealing with my anxiety over starting chemo and radiation, I searched online for a support group for this bitch of a cancer I had. I was careful not to read anything about my disease, as Dr. L had warned, but I just wanted to talk to other people who had been through what I was going through. That's when I found a Rare But There Facebook page for women who had received a diagnosis of small cell neuroendocrine carcinoma of the cervix or her sister, large cell neuroendocrine carcinoma of the cervix. There weren't very many of us, but what we lacked in numbers we made up for in strength and encouragement for each other. At that point I was too wrapped up in questions about what to expect during radiation and chemotherapy to really pay attention to what the other "sisters" in my group were discussing around me. The only thing I remember from that time was that six, yes SIX, women lost their battles to the disease between Thanksgiving and Christmas of   2011.

My treatments began on July 19, 2011 and ended on September 30, 2011. By November, I was starting to feel slightly normal again. Well, aside from the Sinead O'Conner hairdo. At that time I was given the name of a filmmaker who was looking for women for a documentary about cervical cancer for HBO. I jumped at the chance to get involved and the interviews began. The filmmaker came to my house on numerous occasions to talk to Jimmi, my kids, my parents and me. I realized quickly that the focus was mainly on the relationship of HPV to cervical cancer and the need for everyone to be vaccinated against the virus so we can wipe out cervical cancer altogether. Sounded like a good plan to me!

But then the research I'd been careful to avoid smacked me in the face so hard I couldn't ignore it any longer.

One of my small cell sisters made a video for Cervical Cancer Awareness Month in January, 2012. I hit play and watched as photos of my new friends flashed across the screen, followed by statistics and facts about the disease that had turned my once healthy body into a scarred up, bald, menopausal mess at the tender age of 36.

- 12,000 cases of cervical cancer in the country are reported every year. 1% of those cases make up small/large cell neuroendocrine carcinoma of the cervix (SCCC/LCCC)

- The 5-year survival rate for SCCC/LCCC is only 15-20%

- There is no precancerous phase of SCCC/LCCC

- There is no known link between HPV and SCCC/LCCC

I had to rewind and replay the video five times to make sure I had read that information correctly.

The 5-year survival rate is only 15-20%? That means there's an 80-85% chance I'll be dead before I turn 40? Is that why Dr. L didn't want me to read about SCCC? I immediately disregarded all of the warnings and went straight to Google to type in "small cell neuroendocrine carcinoma of the cervix." Every website said a different form of the same thing, "Prognosis poor. Death likely." And, even worse, the survival rate for patients in stage IIb or higher was almost nonexistent.

I was stage IIb.

I was so hung up on the fact that I'd been staring death right in the eyes, without ever knowing it, that I missed the part about HPV not being linked to SCCC/LCCC. Once I'd calmed down a bit, I went back to read the facts in the video again. Wait, SCCC and LCCC aren't linked to HPV? But my gynecologist said all cervical cancer was caused by HPV. I think I'd read that online as well. The information in the video must be wrong. Luckily I had an appointment with Dr. L that day and I planned on asking him directly.

The filmmaker arrived at my house in time to go with me to my appointment at the cancer center because he wanted to be there to film the results of my 6-month, post-treatment scan for the cervical cancer documentary. Unfortunately, we couldn't get permission quickly enough for him to film inside the building, but he had no problem waiting for me outside. On the car ride over, Jimmi drove and I was interviewed on camera. I couldn't wait to spill the big news. Not all cervical cancer is caused by HPV so not all cervical cancer is preventable! I knew this information was huge and so important for all women to hear. I was so lucky to have this documentary as a platform to get the word out to so many people at once! A negative HPV test does NOT mean cervical cancer is impossible. I was gonna help save lives with this information! To my surprise, the filmmaker didn't seem as excited about this new and important data as I was. He urged me to double-check with my oncologist to make sure what I was reporting was actually accurate. I planned on doing so.

Upon arrival at the cancer center, Jimmi and I left the filmmaker outside to wait for us while we met with Dr. L. "Your scan was clear!" announced the doctor, almost as surprised as I was that I was still cancer-free. "I Googled small cell," I confessed. He could see by the look on my face that I knew all the grim facts about my chance of survival. But I had more important things to talk about, "Is it true small cell isn't caused by HPV?" I asked. Dr. L was frank with me, "We can't find a definite link. We know for sure that the regular cervical cancers, squamous cell, adenocarcinoma and adenosquamous, are one-hundred percent caused by HPV, but not small and large cell. We really don't know what causes those." I still had questions, "But I had HPV." Dr. L nodded, "Yeah, it was just a coincidence. Honestly, most adults have HPV at some point or another and may not even know it. It's in something like eighty percent of the population. Chances are, if you've had sex, you'll have HPV in your lifetime. That doesn't mean you'll definitely get cancer. You just happened to have HPV and cancer at the same time, but your small cell was not caused by the HPV."

I couldn't wait to tell the filmmaker! This was gonna blow his documentary out of the water and help to disseminate the correct information to so many women!

The camera was rolling as I exited the building. My giant smile already told him what was about to come out of my mouth, "Clear scan!" I announced. "And," I went on, "small cell is NOT caused by HPV! Not all cervical cancer is caused by HPV so it's not all preventable." Again the filmmaker's face reflected disappointment and I couldn't imagine why.

A few days later, I got my answer.

"Hi Suzanne, it's F." This didn't sound positive. "So, I was discussing your new information with the producers of the documentary and we have a small problem." I listened. "You see, the producers are the manufacturers of the HPV vaccine and they are funding this project. Since your cancer isn't directly linked to HPV, it really doesn't fit the message of the video so they've asked me to let you know we won't be needing you anymore." For real? "They're cutting me out?" I asked. He replied, "Unfortunately, yes. It's just that, since your cancer couldn't have been prevented by their drug, your story really doesn't fit." I was livid, "I understand that, but don't you think women have the right to know that there are different types of cervical cancers they can get without HPV? You can help me get the word out. We can save lives!" He tried to ease the blow, "Yes, I think you have a good point. I think your story needs to be told and I plan on making a totally separate video with you and anyone else you know with small or large cell. You could really help a lot of women. I'll be in touch."

That was January of 2012. That was the last time I heard from the filmmaker.

And here we are, two years later, with two more Cervical Cancer Awareness Months that have been promoting only HALF of the awareness women need. I don't understand why it's so difficult for the correct information to reach the public. Don't believe me? Go online and read. The National Cervical Cancer Coalition says, "HPV is found in about 99% of cervical cancers." The Centers for Disease Control says, "Almost all cervical cancer is caused by HPV." These are reputable sources for medical information. I know I've never been good at math but, as far I can tell, if "HPV is found in 99% of cervical cancers," that leaves another 1% where it is NOT found, right? On the other hand, I am very confident in my verbal strengths and I know for a fact that "Almost all cervical cancer is caused by HPV" does not actually mean all cervical cancer is definitely caused by HPV.

Do the math, my friends. Read the words. Educate yourselves. Educate others. Pay attention to your bodies. Whether you've heard the words, "You have HPV" or not, if something doesn't feel right, it probably isn't.

Please share this post anywhere you can. Help save lives.