Survey Says!

There is a list that circulates Facebook and it is titled something like, "10 Things Not To Say To A Cancer Patient." I've never paid much attention as to who originally wrote the article because I've seen other similar goofy articles about "How Not To Offend Your Cat," so the author is likely some overly sensitive Joe Shmoe hiding behind his computer with nothing better to do than use fabricated lists to boss people around on social media. I doubt they actually went around and took a poll of 100 people, Family Feud style, and came to the general consensus that you better not say certain things to people or you might hurt their feelings. I think that is actually called common sense. However, I will admit that my curiosity has gotten the best of me and I have perused the list. There was nothing on it that evoked negative feelings or caused me to pump my fist into the air and say "You tell 'em!!!" One reason being that I'm not that easily offended and the second reason is because I know that, for the most part, people mean well. I don't mind the questions or stares that my head scarf evokes because, I get it. Though, I do have to admit that there have been a few comments that have been made to me throughout the last few years that left me to be at a loss of words or even angered. The three most outrageous things that I have ever been asked or told are:

1. I had spent some time with this girl for a special project.  I just met her that day and she was asking about my diagnosis. Simple enough. I started out by telling her that I had Breast Cancer and that it was Stage IV and... She interrupted me, asking, "So, like, that means that you are pretty lucky to even be alive right now, right!?" She had a bewildered look on her face as if I was actually a ghost staring back at her. I kind of half laughed as a response, momentarily at a loss for words. She asked innocently but it was also extremely blunt in the same breath. Once I had processed what she asked, I took a second before I responded that I was actually doing well and I think we are all lucky to be alive at any given moment.

(On a scale of 1-10 with 1= not offensive and 10= unconscionable)

Survey Says: 2

2. I was at a local watering hole with some of my favorite gal pals, listening to a band. I was getting ready to head home and this older man approached me and in a way, that I think was his gray bearded, missing some teeth, way of flirting with me, asked me, "What is with that Taliban Rag ye got there on yer head?" Now that one? I was stunned. I actually wasn't pissed, but purely stunned by his ignorance and his word choice. My small community may tilt toward the conservative side but in my opinion, he had all but tilted his old ass completely upside down. I was so disgusted with him that I sharply replied that I had cancer and I walked away. My friend Jennifer could not walk away as easily as I had though. She was deeply offended in a way that it had not struck me and she got in his face and put him in his place. I'm lucky that night, and every day, that I have friends that are sensitive to my situation and always willing to defend and support me.

Survey Says: 8


3. The one that probably angered me the most was actually an online tug-of-words. A friend of mine had kindly posted on Facebook about the recent Relay For Life event that our town hosts. His caption for the post was something that referenced all the cancer patients among us, as fighting our respective battles. It was a heartfelt thing that his other Facebook "friend" decided to rip apart. He said that cancer patients are not battling anything. I immediately felt a rage surge inside me on behalf of myself and everyone else who does fight for their lives daily and thus, I got involved and said as much. He told me that we are not battling anything because we are not soldiers in the military who are in actual battle. Now, I have nothing but pure respect for our military. I know that they put their lives on the line everyday to protect me and my freedom and I'm forever appreciative of that, but that had nothing to do with the original post. He said that you can't actually fight cancer, there is no verb. I told him that we most certainly do fight. Sometimes we fight to get out of bed in the morning, we fight against side effects of medications, and we fight daily pain. If you look in a dictionary, the word battle has several different meanings and can apply to several different circumstances. Eventually, I abandoned the conversation because he was not going to back down but even I was surprised by how angry that altercation had left me. I'm not claiming to be stronger or braver or more important that anybody, but I am in a battle for my life and that faceless person from the internet doesn't get to tell me otherwise.

Survey Says: 10

 I mean this post to be a relatively light-hearted, but still a true view into what I have experienced since being diagnosed. Now, for the most part people mean well and they are timid and gracious with their inquiries and comments. But every now and then, you find a thorn among the roses. If you end up reading that article on Facebook, that I originally told you about, you can  learn what would be appropriate to say or ask to someone if you are unsure. However, if you ever find yourself a contestant on Family Feud and this topic comes up, of "What Not To Say To A Cancer Patient," you can bet these three comments will probably be on the board!

A Basket Full of Broken Eggs

Ever since I was diagnosed, I have been intrigued by clinical trials. Even early on in my treatment, I continuously asked my doctor to keep her feelers out for different studies that might pertain to me and my situation. I was confident in the traditional care that I was receiving but I wanted more. I have always been prepared and willing to think outside the box. I want the latest and greatest and I'm not afraid to take a risk if there is a chance that it is something that could benefit me.

Unfortunately, my attempts at being accepted into trials have not been successful. For various reasons, I have actually been denied eligibility into about five different ones. The details are different each time but they all come down to one thing... I'm not sick enough. I have Stage IV Breast Cancer, STAGE IV, and I'm not considered sick enough. It doesn't make any sense to me and it can be frustrating.

However, I recently got another chance at a new trial. In fact, I'm actually sitting on an airplane right now headed back to Chicago from MD Anderson in Houston, TX. MD Anderson is one of the most revered cancer institutes in the country. They conduct hundreds of trials and are always ahead on what's new in the cancer world. They are exactly what I have been hoping for so when the last minute opportunity for a trial arose, my mom and I were on the first flight we could grab.

I arrived at MDA and spent a several hours getting a 'tour,' of the facility, from port draws, to meetings, MRIs, and everything in between. I was there for an initial screening to determine my eligibility for the trial and based on the conversations relayed to me between one of my oncologists and the doctor in charge of the trial, I was convinced I was a sure thing and this would not be disappointment number six. In fact, they already had my follow up appointment scheduled for the next week. 

Unfortunately, that's not how it ended up working out. I had placed all my eggs in my proverbial MDA basket, counted them before they hatched and then watched them drip a bitter yolky disappointment when my expectations were broken. 

Once again, a trial that was not meant for me. I have a strong faith in God and I sincerely believe that what is meant to be, will be; but, that only softens the blow of bad news, it does not erase it. So, needless to say I was bummed.

And, then? Something incredible happened. I climbed aboard a shuttle bus and I happened to sit behind a family. It was a little boy, his grandpa and his mom. This little boy couldn't have been much more than 2, he was a tiny little peanut. His little brown head was as bald as could be and as he clutched his grandpa's neck, I saw his hospital bracelet. This sweet, tiny human is suffering from a terrible illness, and talk about a humbling smack in the face. I've seen tv commercials for St. Jude's and watched through social media as a very brave friend from high school lost her own son;  but this was the first sick child I had ever made actual eye contact with. I listened to him ask his grandpa various questions and then watched his mom say 'see you tomorrow,' to Darnell, the bus driver, as if they were old friends, and I watched the little boy and his Ninja Turtle backpack disappear. It was then that I realized how truly unfair life can be. That little boy is a hero, no child should be fighting this battle. I will pray for his cute face that I cannot get out of my mind. But I will also go home to my other treatment options and remember that even when I think that I'm suffering... I'm not. 

I'm blessed. Trial or no trial.