A Zebra Finds Some Hope

I'm a zebra. I found this out a while ago when researching my cancer. Everyone knows that pink ribbons are breast cancer supporters. Purple is Alzheimer's. Yellow for military. There are all sorts of colors representing all sorts of groups. Leave it to me to have the "animal print" ribbon. Neuroendocrine cancers are represented by the stripes of the zebra. Foolish me, I thought that this was someone's idea after running out of options and making a fashion statement. However, after reading an article by a specialist at Roswell, I now understand why we are zebras.
I always knew my cancer was unique, especially because of its presentation in my breast. However, I didn't realize that neuroendocrine tumors only make up about 2% of the cancer world. Us zebras, you can't put us in a box either. People ask me all the time, "Well, what cancer do you have anyway?" When I tell them that it is neuroendocrine small cell carcinoma, that's primary location was the breast and then metastases to the liver, they immediately think "OH you have breast cancer! Save the boobies!" But that couldn't be further from the case. These tumors are so misunderstood, in fact, that even Johns Hopkins sent me to the wrong specialist. They again tried to put me in the same box as breast cancer. Not the case. In fact, if anything, my cancer is more like a lung cancer....however, no sign of it in my lungs THANKS BE TO GOD! But, then you add in that my cancer tests estrogen positive, and again people think "breast cancer." So you can imagine how confusing it has been walking the tightrope of diagnosis these past five months. I'm often face to face with doctors who are known as the most intelligent people in their field, and they are dumbfounded. I've sat in a doctor's office and watched a specialist actually Google my condition. Yes, Google. Now, we all know me, and I have always been unique, but this is one time where I would love to be run-of-the-mill, average, vanilla...bland even. No such luck. I am relegated to the zebra preserve.
I've recently reached out to my fellow zebras. I found a very small group on Facebook of people dealing with this cancer. I'm not going to lie. Some of the stories are devastating. There is so little known about our cancer, and there are so few of us...and then you top it off with mine having such an odd presentation, I feel like a leper in the cancer world! The group is composed mainly of caregivers and relatives of people being devastated by this cancer. There are a handful of people fighting along with me. It's hard, for me at least, to read the posts of the caregivers. They talk of the scary stuff, the poor prognosis, the debilitating surgeries their loved ones have endured. The crazy aggressiveness of this cancer is what gets them the most. I understand that they too need an outlet for their fears and frustrations, but caregivers and fighters shouldn't be lumped in the same group. I don't want to hear about the horrors. I want to stay positive, earn my zebra stripes by fighting with my all! There are a couple of people that I can identify with in the group. One, Susan, is a lot like me. She is stabilized currently and remains positive in her posts. She praises God for each day, and reaches out to support anyone who posts in the forum. I find comfort in Susan. I've needed to find comfort in someone who is fighting the same fight. I've needed that camaraderie. You see, once my chemo ended, I felt like I was slacking off on my fighting. I felt like without the chemo, I was basically sitting around waiting for things to spread, for the cancer to get comfortable in my body while I wasn't warding it off. I knew that my body could no longer sustain chemo. It just wasn't an option, but I was worried. I held my breath when I got my PET scan, knowing the aggressive nature of this cancer, and worrying that I was going to have glowing spots. I got the news I hoped for, that I was stabilized. Phew. Now I had to put my faith and hope in the hands of my doctors and the treatment plan.
I did put my faith in them, but there was a nagging feeling in my gut that I needed to do my part to understand my diagnosis. When I was diagnosed in November, it was such a whirlwind of appointments, biopsies, surgeries, chemo, hospital stays and motherhood. I did not have the mental capabilities to react as I would normally to anything that hits me in life. I've been a reporter, a research nut, a constant observer my entire life. I've figured out what people have had going on with them before they have or their doctors. I've pored over documents, searched the ends of the Internet, called on experts, done it all whenever I have been faced with a problem. And chances are, I could solve that problem if I put in the legwork. This was different. Cancer was a whole other beast that I was not ready to face. I told myself I would not research it in the beginning, because I wanted to keep myself positive, and not everything you read on the internet is reliable. I didn't need my mind to start spiraling in the wrong direction because of some random blog or a scholarly article that gave numbers I didn't to see. I have chosen, since the beginning, to not be given a "timeline." Who wants an expiration date on their life? And even then, we all know that you can drink milk after the expiration date and still enjoy it, so what's the point? :) I was thankful that I had a doctor who believed in my philosophy. He didn't talk in numbers, he never made me worry, he always had a plan. Yet he was very empathetic to my case and concerned about me as a whole person, not just the cancer, how was I dealing with all this chaos and trying to be a mom? I will never forget that about him.
So in those first months, my doctor had my full trust and faith. I would keep up the positivity, keep myself mentally strong, and he would take care of the physical part. I like to think we both kept up our ends of the bargain. Today I am stabilized and still positive and he got my breast tumor to resolve and kept me healthy through chemo. Now, at this crossroads, I've given myself permission to enact a new part of my warrior status. I am allowing myself, for the first time, to delve into my paperwork, to research my cancer, to return to my old roots....to be me again. I don't know if this has something to do with no longer being on chemo, so I am able to put that aside and focus on another part of my fight. I don't know if it is because I finally am starting to feel like me again. I finally went to a family function the other day and was able to crack people up. It's been months since I heard genuine laughter at the things I've got to say. Months since I could crack up a room and feel that lightness in my heart when I do it. Life has always, always been about humor to me. Without humor, you have nothing. For months, people haven't known what to do around me. Do they make jokes? Do they feel sorry for me? Do they not complain because I have it so much worse in their minds? Let's face it, people have been dealing with me with kids gloves on. And that's ok. There is no playbook for dealing with someone with cancer. Did I miss the laughter....god yes. Especially making people laugh....that is such my favorite thing to do. But finally, on Easter, I felt like I had my funny mojo back! And it felt so good!
I'm back to working out for the first time in 18 months. That's a HELL of a lot of time to be away from physical fitness. But I am working out with a group of cancer survivors and people in treatment. I find myself being a mother hen there, making sure I talk to everyone, check in on them, see how their journey is going. Of course, they all look at me as the youngin with a new baby and again, they feel sorry for me, but I try to take the focus off of me, to let them feel like we are all in this together, because that in turn helps me to put one foot in front of the other.
This zebra has slowly been regaining her old life back. I dove head first into my medical file, finally. I mentally told myself that I might not like what I was going to see, but that it had to be done. I would be letting the cancer win if I turned a blind eye to everything going on in my treatment. I felt ready. I knew it was time to open that binder, look at the results, come up with questions, and take ownership over my own health. After all, we are our only and best advocate in this medical game. If I was going to fight this and win, then I needed to take it all on, not just the parts I could handle.
Opening that folder and sifting through the papers was not easy. Each scan, biopsy report brought me back to that first week of my diagnosis. I remembered driving to the doctor, knowing my life would never be the same. Watching my mother sob to her sisters. I remember getting my first mammogram, knowing that something was lurking in my breast and kicking myself for not doing self breast exams. Those reports take me back to the anger, to the frightening moments, the dark times when I wasn't sure if I had it in me to do this.
The medical jargon is so confusing and unnerving, but I made myself stick with my research. I "pounded the pavement" on the Internet anyway, finding articles, looking for inconsistencies, hoping for answers. It was the first time where I got a real feel for what my cancer is and what it is not. I could understand now why I wasn't identifying with so many cancer victims. Everyone's story is different, but mine was so hard to distinguish and explain that I just felt better off keeping it to myself. I scattered the papers around me and looked at the dates, the letterhead, and I was back in that hospital room in Crouse getting my first chemo, missing my baby, and creating my plan to survive. I don't know when the switch went from dark to light, when I realized that I could no longer wallow, I had to take the bull by the horns and beat this thing. But I know that I did in that hospital room one off the many nights I was alone with my thoughts.
Delving into that paperwork, I finally was taking back control from the cancer, even from the doctors. Up until this point, I had been a fighter, but not in every sense of the word. The scared little girl remained in the back corner of my mind and was willing to let others make the decisions to steer the course. Yes, a lot of this was because physically and mentally, I just wasn't ready for the task. I had to surrender myself to the physical fight and get that out of the way. But now I was ready. I was ready to be me again. The person who gets to the bottom of things, solves problems, seeks solutions rather than sitting and letting things happen. All my life I have looked to better myself. Now I had to walk the walk. It felt exhilarating to be back in my old shoes. I'm a sleuth by nature, and guess what, I found some issues, some inconsistencies. I was able to be assertive, and call out my medical team on mistakes. I was also able to face the diagnosis head-on. I took to the internet to read all about it. When I got to the prognosis parts, I skipped over them and moved onto the next article. I found experts, researched their bios, worked through scholarly articles to find people all over the world who knew something about neuroendocrine tumors. I made contact with Houston, Texas, Nashville, Tennessee, Galway, Ireland, NIH, and ultimately Roswell Park in Buffalo. It was time that I was mentally in this fight and I finally felt I was there. I boldly took the step of emailing a doctor personally with my story. I wondered if he would bite. If he would take me on and try to get me some answers. The next morning, bright and early, I had a phone call from his office and an email exchange among his colleagues. I had hit the jackpot...and I had done it myself. I can't tell you how debilitating it is to have cancer. Not just physically, but mentally. It takes away all your fun, it tries to strip you of your identity, make you a slave to its treatment, and numb your mind. It is easy to get caught up in that mindset of treatment and to let fear overtake you and turn you into something you never were...a meek, scared, and almost helpless person. Wrestling your life back from cancer, going back to doing the things you love, and relishing in the mundane of simply researching something, that is what makes surviving worth it.
My work has paid off. I am in contact with what I feel is a wonderful doctor who has an idea of what she is up against here. She personally wrote me an email and has already answered my questions about my current treatment. We have decided to hold off on the hysterectomy until I see her. She's in Buffalo and she signs her emails with her first name. She wrote me back at 1 a.m. and ended her email by saying I am doing everything I can and that they are going to do all they can to help me. For the first time, I felt something come alive within me. I was jumpy and anxious, but in a good way. The cloud of fear which has dogged me since November, showed some slight breaks of sunshine. What was this feeling? Where was it coming from? It finally dawned on me, it was HOPE. It came trickling in at first. I liked how this woman sounded, I dealt with the new patient nurse and she was delightful. I ran around like a crazy woman last night, fedexing files, getting faxes put through and sending emails making sure all my ducks were in a row. I could barely sleep last night because of this newfound hope. I had been praying for a sign to know if I should go through with the hysterectomy, and I got that sign at 1 a.m. when the doctor emailed me back to hold off. I was ready to scream at that point, scream with relief that I finally found someone who understood what I was going through and genuinely had the ability to help me. She was an expert and I felt safe for the first time in a long time.
Tonight, as I was explaining this to my husband, I brought up Dr. Iyer's profile at Roswell. I wanted him to hear what she was an expert in and explain to him why I felt hopeful. As I read her profile, I clicked on an article she wrote for one of the discussion forums. As I read it, it was like my heart felt ten sizes lighter. Her writing was so much like mine. She was explaining my cancer in terms anyone could relate to. I just felt connected. And then I read this:
 "To me, facing these cancers, like all cancers, is really a journey from being a patient to being a survivor—becoming someone who has taken their cancer and learned to live with it, to run with it, to make the most of life while fighting. We are here to help anyone become that kind of survivor, and I believe our patients appreciate it quite a bit. It is something I am very thrilled to be a part of."
I almost dropped to my knees in that moment. I wanted to thank God, my grandmas, Sister Mary Ann Cope, Aunt Kathy, Gloria, and Michelle for leading me to this woman. I know in my heart of hearts that they are all responsible for this doctor appearing before me.
I haven't allowed myself to feel hope in quite some time. Call it superstition, or fear, I just remained positive but didn't know what was in store for me. Now I have reason to believe that I can hope and I'm no longer a zebra wandering alone. This zebra is to fight on all levels now. I'm earning my stripes and learning to run with it. I will be that survivor, because I've got this!