Monday, October 12, 2015

Tell me all your thoughts on god

I recently started attending church after a very long hiatus. It seems cliche, but when I was faced with the possibility that my time here alive on Earth may be cut short by cancer (turns out I only "sort of" had cancer), I started thinking about my spiritual self again. Since I wouldn't describe myself as Christian any more than I would describe myself as Muslim, Jewish, or Buddhist, I didn't really know where to turn. I prayed just in case someone was listening, though I generally believe prayer is a form of positive self-talk that offers comfort and strength. Several months after surgery, my body was healing, but my mental state was deteriorating. Caught in a downward spiral of "what ifs," I made an appointment with the psychiatry department at my medical group. The lovely nurse practitioner whom I had seen once before on the day they told me I had a large pancreatic tumor talked to me for 20 minutes and referred me to the Living Well Cancer Resource Center. I expressed my concern that I didn't "deserve" their services as I didn't really have cancer. She looked right at me and said, "It counts." It took another month or so for me to work up the courage to call Living Well, but I did eventually call and started receiving individual counseling. The counselor didn't turn me away of course, so I saw her several times. She asked me about religion, I told her I had none. At a later session, I told her I was contemplating going to a Unitarian Universalist service. In the true fashion of a psychologist, she asked me how I felt about that. I told her something like, "Well, I thought I'd give it a try. I don't have to go back." She affirmed. So I eventually worked up the courage to go to a Sunday service. I attended on a day they had a member of the congregation give the sermon rather than a church leader and the sermon was titled "Back to School." The main ideas of the message I left with were choosing kindness, service to others, and self-improvement. I felt like he was speaking directly to me. 

Most people of faith that I know would identify as some kind of Christian, so I am taking a leap and assuming most of my readers cannot define what a Universal Unitarian is. Frankly, neither can I (yet). But here is a definition lifted straight off of their website:

As Unitarian Universalists, we are part of a long tradition of religious freedom, theological inclusiveness, and community acceptance, and we cherish our diversities of race, age, ability, politics, theology, sexual orientation, culture and ethnicity.

Seems like a good match for me. I was raised watching Mister Rogers and internalized the idea that "You are special." I don't mean me, specifically, but each and every one of you are a worthy human being. Any religion that preaches self-righteousness and exclusivity is not for me. Going back twenty years or so to my "Statement of Faith" I gave at my confirmation, I said before the congregation something like: "Faith is what you make it; it is individual. No one religion can be right and not every religion can be wrong." I'm paraphrasing here, as I didn't actually keep that piece of loose-leaf notebook paper, and I surely did not properly use the semi-colon at the age of 13. My Pastor and the congregation accepted my statement of faith and I was confirmed in the United Church of Christ faith. They apparently were an accepting bunch and let me in despite my lack of commitment to their particular brand of Christianity or Christianity in general. The Pastor was a jovial man who once told me that he saw God everywhere, even in a package of Oreos. I always felt at home there. My family moved shortly thereafter and I never did find another house of worship with which I identified. 

I have been back to service several times and I have always walked away wanting to be a better person. If that isn't the right reason for going to church, I don't know what is. Some of you don't understand, and that's okay. Some of you think I'm wrong, and that's okay, too. I stepped out of my comfort zone when I stepped into service that one August Sunday. I reminded myself that I didn't have to go back. I did go back. Several Sundays in, I still tell myself I don't have to go back. But I probably will.

Thursday, October 8, 2015


I bet nearly everyone has a scar or two once they reach the age of 33. My two-year-old already has two on his chin. Poor kid will have patchy facial hair. Hopefully he doesn't want to be a bearded hipster or Santa Claus when he grows up. I certainly had more than a few scars before I got my Whipple. The Whipple procedure (that nasty surgery I had to remove my tumor) left me with 5 new physical scars on my abdomen. No biggie. I had a robotic Whipple, so 3 of my small incisions housed robot "arms" for 11 or so hours, and 2 of my scars are from drains put in place after surgery. All of my scars are less than an inch long. If you are interested in seeing a picture, click here. (That 6th scar in the middle is a remnant of my late adolescence, a scar from a navel ring.) I have no problems with showing off my battle scars, but I do not want to subject my abdomen to the reader who would rather leave it to his/her imagination. 

I should add that the surgeon had to remove the tumor from a much larger incision, so he re-opened my c-section scar and removed it from there. Also no biggie; it healed rather quickly. Now nearly 9 months later it is barely visible. 

So why am I writing about my scars if they are no big deal? To stress the point that even though I look okay and "normal," looks can be deceiving. My insides were sliced and diced and reconfigured. That took MONTHS to heal. I'm still healing. Some days I don't feel great physically, some days I don't feel great mentally. This could be said of anyone, especially those who suffer from an invisible chronic illness. 

Several weeks after my surgery I visited the dermatologist. He saw my incisions and wondered if I had had a my gall bladder removed, a fairly normal occurrence in my age group. When I said, "No, I had a Whipple," he was surprised to say the least. He asked plenty of follow-up questions, such as why, what's the prognosis, how am I feeling, etc. I've seen him twice since then and each time he asks relevant questions about my healing and "new" (but not improved) digestive system. He's familiar with the surgery and has a family member who had a Whipple for bowel cancer about 10 years ago. He knows what a big deal this surgery is; he knows there are lasting effects. 

My small scars are the only evidence to the world that I had a pancreatic tumor, and even the scars suggest I had routine gall bladder surgery. People in my life often inquire about my health and I most often respond in a positive manner, because I feel pretty darn good considering. However, the question: "So you're totally fine then?" or some variation often follows. How do I answer this question? The questioner wants to hear that of course, yes, I'm totally fine, back to normal, etc. Or they say, "Good thing that's behind you" or the like. I'm not totally fine. The surgical procedure is behind me, but I'm still recovering and there are physical effects I will likely endure for the rest of my life. I'm not complaining, I am so thrilled to be alive and feeling as good as I do the vast majority of the time. My physical scars may be fading (thanks, Mederma!), but I have been altered. The surgery and diagnosis will never be totally behind me. I will never again have a gall bladder and will always be down half a pancreas. I will always know that my sort of cancer could come back, though it probably won't. Every time I get a follow-up scan I will get that "what if" feeling in the pit of my stomach. Odds were in my favor that I didn't have a pancreatic tumor in the first place, but I most certainly did. These are the scars that you can't see. They too are fading, slowly, but they will never disappear. I will always be thankful for good health and empathetic to those whose health suffers. When you ask me how I'm feeling, I will almost certainly say "pretty good," because that's the truth. For 33 years I accrued scars whose origins were not memorable (besides that belly button ring!), but on January 20, 2015, I received more than a few very memorable new scars. I wear them proudly, knowing it could have been so much worse. We all have visible and invisible scars; I know that so thoroughly now. They remind us of where we've been an how far we've come. They remind me that I'm alive. I'll take it. 

Sunday, October 4, 2015

The people that you meet

Day 10 in the hospital was a Terrible, Horrible, No Good, Very Bad Day. I have since referred to Day 10 as one of the worst days of my life. Anyone who saw me that day noticed that I looked Terrible and Horrible, and that I was not myself. I had just pulled out my own NG tube (an awful thing that goes up your nose and down your throat) in a fit of extreme discomfort and effort to have some control over my body, upsetting my nurses and my family. I nervously awaited my morning visit from my surgeon, but to my surprise, he was unfazed. My kids came and saw me for the first time since my surgery that day, which was wonderful, but I'm glad the then newly 2-year-olds will not remember their visit. However, I will always remember that dark day. This is both a fortunate and an unfortunate thing. Why remembering my Very Bad Day is unfortunate is obvious. The first few days in the hospital are hazy memories, which is probably a good thing, but Day 10 is crystal clear. Fortunately, my Terrible Day 10 led me to people who helped my mind find a path towards recovery. 

I have yet to knowingly meet someone who has undergone my type of surgery face-to-face. We're a rare bunch. I don't believe I have mentioned the type of surgery I had. I had a pancreaticduodenectomy, more commonly referred to as a Whipple procedure. Overly simplified, I had parts of my digestive system removed (including the tumor, obviously), and then the remaining organs were rerouted and reconnected. Before I had the surgery, I was warned that recovery could take 6-12 months. I share these details to illustrate why meeting someone who has "been there" is so essential to healing the mind. On or around my Very Bad Day, or Day 10, a kind woman I met on a Facebook "Whipple Warriors" group CALLED THE NURSES' STATION AT THE HOSPITAL on my behalf and told the nurse who answered the phone a few ways to help me out my darkness. In this small act of kindness, a virtual stranger became a friend. She talked to me on Facebook and expressed that if she lived closer (she lives several hours away) she would come and visit me. She empathized. She listened. She knew the pain I was in. Eight months later, I know she is following my blog because she comments on almost every post. Knowing I was not alone was enlightening. She is not the only person I met as my body healed, but she was the first Whipple Warrior to reach out to me.

In the coming weeks I would meet more people who I will never forget and hope to meet in person someday. I met another educator who underwent the Whipple a week before I did for noncancerous cysts. Being a week ahead of me, he gave me small glimpses of hope that soon I too would be able to eat a bagel with cheddar cheese for breakfast. We bonded over our pain and darkness, but also over our recovery. We shared a common addiction to isotonic beverages (he liked Vitamin Water, I had to switch to Gatorade when I puked Vitamin Water one too many times). 

Amazingly, I met a wonderful woman who had had the same type of "sort of" cancer as I did, but her tumor required a distal pancreatectomy (the other half of her pancreas and spleen were removed). Hers was removed a few days prior to mine. I say "amazingly" because this tumor is so especially rare. There are about four thousand members of the "Whipple Warriors" Facebook group (still an elite bunch), but there are only 69 members of my tumor-specific Facebook group, many of whom do not live in an English-speaking country. Let that sink in. In the 1.5 billion Facebook users, only 69 of us have found the Frantz/Pseudopapillary tumor group. There are more, to be sure, but we are a really, really rare bunch. It's entirely possible that she and I were the only people in the world that had this tumor removed in January 2015. She lives in Miami and I can't be more thankful for our virtual connection. We will meet someday, hopefully with our families (she also has two young children), and we will cry. At least I will. In the mean time, I will text her before every follow up CT scan and oncology appointment. She gets it. I'm not saying you don't get it, but she gets it on such a personal level that I feel less alone. 

I am so thankful for these three individuals, though they only scratch the surface of support my family and I have received over the past year. They led me out of my 
Terrible, Horrible, No Good, Very Bad Days and are still there for the days I veer off path. Those days are few and far between, but I know I will always have those days. We all do, no matter the state of our pancreases. 

Thankfully, there are no pictures of me in the hospital. This is the first picture I shared after my surgery. It was in March following my January "Whipple." It was also my first walk outside. My dog Lola was pleased, as was I. 

Saturday, October 3, 2015

Why (not) me?

When the doctor told me I had a sizable tumor in my pancreas, I asked him the few questions that came to mind. As I was walking out of the door of the exam room, I asked him, "Do you think this is going to kill me?" He calmly answered, "No, I don't think so. You might need chemo or radiation, but I think you are going to be okay." To date, so far, so good. No chemo, no radiation, not dead. But before I thought to even ask that question, I asked him "Why?" He informed me that in the absence of a strong family history, there is no good answer to that question. There is nothing I did to cause the tumor and there is nothing I could have done to prevent the tumor. 

Over the next several days and months, I would occasionally find myself going down the rabbit hole of the "Why me?" question. Heck, my brain still goes there on occasion, even though it knows better. In life, things happen. Accidents happen, tragedies occur, genes mutate, and tumors grow. Perhaps a better question is "Why not me?" The answer: no reason. There is both some comfort and some terror in the notion that anything can happen to anyone for no particular reason. "Why me?" sounds a bit whiny and implies that other people might deserve your fate more than you did. "Why not me?" acknowledges the random and awful as random and awful. 

The question "Why not me?"can also address the good things. It is a question to ask yourself when you are trying something new, different, or unfamiliar. It's a question I asked myself when I decided to share my story via self publication on the Internet. I wasn't sure people would want to read what I had to say, but people do sometimes want to read what others have to say, so why not me? 

I can't stress enough that I am not writing to compare my awful to your awful. I am not writing to minimize the experiences of others. I am not writing to get sympathy. I am acutely aware that my random awful could have been so much worse. A large portion of people who undergo the same surgery I did are fighting "real" pancreatic cancer (not my "sort of" cancer). I do know how lucky I am. Since I am just a lowly blogger and not a pop star, I am going to pull out a Pitbull quote to (w)rap this up: "everyday above ground is a great day, remember that."