Friday, January 17, 2014

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?

2 comments:

  1. Suzanne, that story broke my heart! I know doctors are busy, but Dr F seriously lacks simple human empathy for you as woman going through a horrible illness. Not to mention the fact he is supposed to be a "trusted" medical professional----What a sham!! What is the point of going to Medical School to take an oath to diagnose, treat and care for people, if you don't have the basic skills to know what to day to someone who is understandably terrified? And seriously, what kind of doctor's office doesn't pay attention to the letters they are mailing out to their patients? There's no personal touch and that happens in too many situations!! In every decent business school, you learn not just about "high tech", but just as importantly, the skill of "high touch". People want and NEED to feel cared about--it's friggin' Human Nature 101!! When you think about the importance of the profession, maybe they should require medical professionals to continue education and training in how to communicate and support their patients with empathy and iNTEGRITY!! God bless you on your journey through all of this and thanks for spreading the word about the serious lack of empathy that exists our healthcare system.

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  2. hi suzanne i stumbled across your blog as ive been googling erratically as just had my pap smear done as i have been bleeding constantly with abdo pain tiredness since december etc feel as though am going crazy as docs just ignoring me, andmy pap has come back as normal so he wont do further tests, but ive learned through researching google that small cell and adenocarcinoma Do not always show on the pap smear really quite frustrating , you also sound like your doc f was a complete ***** but luckily you got through and now have amazing miracle to loook forward too good luck with everything you deserve it :) xxxx

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