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Saturday, September 3, 2016

Radiation 3.0

If you notice a full moon in the next couple days, don't expect wolves to start howling or zombies to be lurking nearby. In fact, it's probably not a real full moon at all. 

It's my face. 

Dun dun dun...I'm on steroids again and the side effect known as 'moon face' has taken over. 

If you're not familiar, that means that steroids cause a lot of water retention and swelling in my body. Every ounce of me is fuller and more uncomfortable that you can imagine. And if I allow myself to vulnerable for a moment, I'm pretty self conscious about it. 

Sure, the upside is that the steroids are helping my body,  but the downside is physical discomfort. My clothes hardly fit and I look like I grew a second face. 

The reason for the steroids (this time) is because I had to have brain radiation again. This is my third time riding in this rodeo. The two spots that they radiated in my brain were not new, but they were finally juuuuust big enough to treat. Which is actually a good thing, because we are zapping those bad boys right outta there, one spot at a time! The job of the steroids is to make sure there is no swelling in those areas after the radiation, so pardon my facetiousness and joking complaints about their side effects.

The process of brain radiation is uncomfortable. It doesn't hurt, but I'm required to wear a mask that is super intense. The mask is a perfect mold of my face, in fact, when they make the mask it's reminiscent of a paper mache project that you might have built back in your junior high years. The purpose of the mask is to hold me as still as possible so the radiation goes directly to the right place. 

We don't want to be haphazardly shooting lasers all over the room and hoping for good luck!  

The real buzz kill of the mask is that when they attach it to the table, it's tight. Like, super crazy tight to where even blinking requires effort. It's not for the claustrophobic crowd, that's for sure. 

Once you get going, the overall treatment is about 20 minutes per spot and you just lay there listening to the clicking and beeping of the machines surrounding you.

Overall, my doctor says he is amazed at where my brain is now, compared to the devastation he initially saw in 2014, when I had brain surgery. It seemed like a long road then. Now through a few 'spot treatments' and some really well-working medication, my brain is showing minimal issues. We will still keep a close eye on it with MRIs every 8 weeks; however, to have come this far is a huge accomplishment. 

My brain has always scared me the most because it's the central control station for... everything; but to know that I'm 'winning' in this part of my body, is a huge relief. Steroids, moon face, and all.

Besides, the moon lights up the night sky so if I have to have moon face for a few weeks, at least I'm still here, doing my part to help light up the world. 


Wednesday, August 24, 2016

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!



Tuesday, August 16, 2016

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.

Monday, June 6, 2016

'Roids

I have a love-hate relationship with steroids. I recently tapered off of a large dose and the side effects were running rampant within my body. I was truly convinced, as I ballooned into a white whale, that I was supposed to eat everything in site. That could have meant an unspoken invitation to someone else's leftovers, late night snacks, and about 8 breakfasts, 6 lunches, 4 dinners, the partridge in a pear tree. (Who am I kidding, I ate the pear tree too).

I initially started gaining weight from steroids in August when I began chemotherapy. It was a slow climb at first. They were given to me as part of my premeds to help prevent nausea; which, they did. But they also caused some problems. I felt full and swollen most of the time. Eventually, I asked for them to be removed from my regime. My wishes were granted and I was still spared the nausea, so I was pleased.

Unfortunately, they semi-recently came back into play and they seemed to have returned prepared to settle some kind of score. They arrived with a crummy mood and put me in a crummy mood. While there was no roid rage, I could tell that I wasn't acting like myself and I'm pretty sure that even PMS probably wouldn't know what to do with me.

I understand what they are supposed to ease some of my symptoms but in my opinion they caused more harm than good by unleashing this hangry hairless monster into society. I would compare myself to Godzilla in relation to my takeover of food, but when I wasn't busy terrorizing the kitchen, I felt more comfortable unbuttoning the top button of my pants and rolling from place to place.

I might be exaggerating just a tad, but you knew that didn't you? I was finally permitted to slowly stop taking these meds but it took a month to appropriately wean off of them and the aftermath left me about 15 pounds heavier. In the bigger picture, anything that can help me is for the greater good even if it tips the scales and requires larger jeans.

 Plus, as much as I complain now...it was a delicious journey.



Wednesday, April 6, 2016

My Superheroes Share My DNA

Sometimes you take for granted the most important things or people that are right in front of you. Those things may be family members, old friends, a roof over your head, or even... cake. You don't do it on purpose, but it is just so easy to take comfort in just knowing that the unwavering love from them is enveloping you and truthfully, always has. 

I was looking back through my past blogs, searching for some inspiration since I hadn't written in awhile and I noticed something odd. In the three years that I have been blogging, I have never once talked about how truly amazing my parents are. I mean, if you know Rex and Nancy then you already know that about them and they don't need any introduction... but, they do need recognition.

Avery and I spent her early life living in the Chicago Suburb of Elk Grove Village. After awhile, being a single mom, having cancer, and living in a third floor walk-up, we decided to move back to my hometown of Mahomet. It was going to be a transition but it would be much easier, for everyone. So, Avery and I packed up everything and we headed south. Now, living with your parents might sound lame, especially as a 30-something; but, after we discussed curfew, having friends over, and chores, my parents understood the rules of the house and we have never had a single issue. Ok, perhaps that isn't exactly how it went down, but it does run smoothly and we continue to live in a sweet and balanced harmony. It was a good move.

I was fortunate enough to grow up with two heroes in my household but I have to admit that as a child, I was definitely a daddy's girl. My dad could do no wrong by me (sometimes to the exasperation of my poor mother) and I was truly convinced that he could walk on water. I'm not sure at which age I became convinced of this, but I was happy to tell anyone that would listen about how "MY" Daddy could walk on top of the water; obviously I now know that the truth of the matter is that he would sink. To the bottom. Like an anchor. He isn't actually much of a swimmer, but in my idealistic child mind, I knew that my Dad was the best and that fact would never change. 

As I grew up past puberty and teenage angst I didn't stop being a daddy's girl but, my mom's and my relationship really began to flourish. We had always been very close but it was becoming more fun to relate to her on a level of friendship rather than just guidance. Especially, when I was in college. I would call her from campus on Friday and Saturday nights, usually about 2 am and give her a rundown of the nights' shenanigans. She always took my call and even through a haze of sleepiness would act interested in what I had to say at the late hour. If there was a Friday or Saturday night at 2 am that I didn't call I would receive one from her instead, at that exact time, just to make sure that everything was ok. 

My dad traveled a lot when I was a kid so my mom was the one that would chase the monsters away for me. This continued even into adulthood. After one of my surgeries, I followed a bizarre routine where I would fall asleep at night for about a half hour after taking heavy painkillers and then I  wake up and request a snack of cheese and crackers. I would lay in bed, half-sitting and half-laying while munching on my snack. Nurse Nancy was always there to listen to my rambling and one night even save my life! As it happened, per my usual snack time, a man appeared in my room. He was tall and stood in the shadows staring at me from across the room. I was kind of scared of him because he wanted to steal my cheese and crackers and he wasn't friendly. But not one to let anything happen to her little girl, Nancy approached that man (I'm not kidding, she walked over to the empty corner of my bedroom) and told him he wasn't getting my snack and it was time to leave. Because of her? I was able to enjoy my snack and the scaries were gone. 

My mom has always been the one to take away the scary aspect and bring the humor. We can be sitting in a doctor's office awaiting news and all the sudden break out into laughter about nothing in particular. It's one of my favorite things about her. She loves fiercely and is the most loyal person you will ever meet, but she can also bring the humor to any situation. She has sat in every cancer appt that I have ever had, negotiated with med companies when my insurance company wouldn't cover something, and spent countless hours behind the wheel of her car driving me to and from appointments both local and away. We can cry, we can joke, and sometimes even argue, but she has never failed to be everything I need her to be. She is the person you want by your side and she is my best friend.

I could fill this blog with stories of my amazing childhood and upbringing, but I would be reminiscing for days. Truthfully, I would probably end up brewing a cup of coffee, pulling out the old picture albums and forget all about this blog. Even though that would give you a glimpse into the awesomeness that is my parents, it wouldn't even begin to extend the gratitude that I have for them.

Some days, I think that my cancer diagnosis is harder on my parents than it is for me. Actually, I know it is. Everyday. I can see the sadness in their eyes when we receive bad news, if I'm having an off day, or just when they simply say goodnight. Yet, they stay true to my desire to keep things upbeat and positive outwardly, because they know that is what I want for myself and for Avery. They keep their heads up and their hearts strong so that we can all fight this together.

God gave this journey to me and he gave me the best team to have by my side. I love my parents more than they could ever imagine and there is no real way to express that to them other than to show them everything they have taught me by being the best parent that I can be. They would walk to the ends of the earth if they thought it would cure cancer. But until there is a cure to walk for, they walk right next to me.



Thursday, December 31, 2015

What do I say?


Recently, for the first time ever, Avery asked me why I don't have hair. She was looking at a picture of me and pointed out that my hair was long then. However, I barely had time to process her question before she was on to another topic.

So, subject dropped.

Then, later that night while we were laying in bed, she asked me again. She simply inquired, "Where is your hair, Mama?" Even though she had brought the subject to light earlier that afternoon, I hadn't prepared what I was going to say. So, instead of a direct answer, I bought myself some time and answered her in a sing-songy voice, as if I was reading a page from a Dr. Seuss book. I said, "Some people have loooong hair, and some people have short hair! And some people?? They dare to have NO hair!"

This response satiated her curious mind and made her giggle. She was no longer oblivious to the situation but also not yet clued in either. I know the question is going to come again and I'm anticipating the day when she realizes that most Mommy's have a full head of hair and will wonder why mine grows back in sporadic patches.  I still haven't decided what to tell her, but I do know that it will be up to me to tell her and not anyone else.

With each passing day, she is getting older and more aware. She doesn't miss a beat. She senses the tenderness in my voice when I tell her I love her, the frustration in my expressions when her listening skills have fallen by the wayside, and she knows all the right manipulation techniques to get her way and turn me into mush. My child... she is wise....

So, how do I explain to my doe-eyed three year old that I have cancer. A cancer diagnosis that despite the odds stacked against me, I continue to fight everyday... for her. How do I tell her that I do it for her smile? That I do it so that I can be there on her first day of kindergarten or to share in her excitement when she hits the game-winning run in a softball game? How do I tell her its because I want to be there to hold her close when her heart gets broken for the first time, or she has a fight with her best friend? What about when she walks across the stage to accept her diploma? What words are there that can adequately describe my desire to be there to fluff her wedding gown someday and assure her that no bride has ever been more beautiful and then be there to help her care for her own baby one day when she becomes a mother?

What do I say? These are not the things that will travel the concourses of her young mind if I tell her the reason, so for now, why worry her with the truth. I don't intend to syphon her innocence any sooner than I have to, watching her brow crease in confusion as she struggles to understand what my words mean, when I don't even know the true meaning myself.

The right time will come, and when it does, the right words will come with it. In the meantime, we will play it light, bright, and easy and I will always do whatever it takes to keep her life as normal as possible and to not change her view of me as her role model, hero, and most importantly, her mommy.


Wednesday, October 21, 2015

The Game of "Life"

I was 5 years old and starting my year in Mrs. Volrath's  Kindergarten class and it seemed like a such a big place in my little mind. I was nervous that morning, until I turned around in my chair and saw the same nervous smile on the girl sitting at the table behind me. The little girl sitting there had dark curly hair and by sharing that initial smile, we quickly became inseparable in the most giggle-filled yet mischievous way... it was just that easy.  There were so many happy days of cruisin' down the sidewalk in her pink Barbie Convertible with the wind blowing our hair and playing Nintendo. Lachelle occupies a large part in my heart and my childhood memories. One memory in particular was her 8th Birthday. She really wanted the board game, The Game of Life. I remember being at store with my parents, who purchased it for me to give to her and I was so excited because I knew that she would love it. She squealed when she opened it and we immediately began playing it in her basement, sitting on our knees among piles of recently abandoned toys and Barbies. We would spin the colorful dial, hoping to land on a spot that would allow us to fill our diligently-selected tiny plastic cars with an entire stick-figure family (openly hoping to have an entire backseat of daughters.) As we sat there collecting piles of paper cash from our pretend careers, we chatted about being "dormmates" when we grew up and went to college, and being each other's bridesmaids. As it turns out, both of us were completely unaware of what realities our lives would eventually bring to us.

Lachelle's and my friendship was very close but it was also tragically short. Lachelle passed away from Lupus when we were in 2nd grade, she was diagnosed in October 1991 and had gone home to God by March of 1992. I remember being told that it wasn't a disease that children usually get and beyond that, I didn't understand anything else. I remember a little bit about the progression of the disease though, and how she had special permission to lay down and rest in the school office if she felt fatigued, how she could have those white and red star mints to suck on, and I remember shielding us with my jean jacket by creating a tent to hide us from from the children that would board the school bus, gawking at her cheeks, which had become very swollen from her treatments. It's ironic for me to think that my own symptoms would so closely reflect her own, some 20 years later. When things got worse for Lachelle, I was able to go visit her and push her around her hospital floor in a wheelchair. I pushed her up and down the halls for hours just talking to her. She had recently had a stroke though so she wasn't able to respond very much, but she knew who I was and her deteriorating condition didn't phase a young me. Fairly soon after that, Lachelle passed away. It was hard on me at first and I would cry at night because I had to break promises to her of plans that we had, big and small, and I didn't understand how to reconcile that, being so young. Actually, it is still hard for me in my own journey, except now that pulling feeling stems from wanting to promise my daughter the world, but possibly not being able to keep those either. That is why living in the moment, day by day is so important to me.  But, I was very close with Lachelle's family and that didn't change after her passing. I was asked to be a part of her mom's wedding when she got remarried. Lachelle was supposed to be the junior bridesmaid, but instead, I got to stand up in the place of my best friend and share in her family's happiness following such a sad time. I got to be her bridesmaid. Lachelle also had a little sister named Chloe that was born the August before she got sick. Her mom, asked me, soon after the funeral, if I would be Chloe's honorary big sister. That was the biggest honor that could have been bestowed on me and I took my job very seriously by frequently visiting to play with her and eventually being pen pals through my school years, after my family moved away. In fact, just last year when I was living in Chicago, Chloe and her sister Grace came to visit me.

Today is Lachelle's Birthday and I'm a little tearful as I write this because I still love her, and 24 years later, I still miss her. Through the years and even into college and grown up years I kept her picture in a box in my bedroom. It's only recently, since I moved that I can't find the picture, my mom and I actually looked for it tonight.  But that's ok because lives in my heart and today, being her birthday, I wanted to write this blog to honor her memory but I also wanted to write it because that memory of her 8th birthday, when I gave her that game, is profound for me to look back on. It was symbolic in her journey and it is symbolic in my journey as well. We passed "life" lessons between us at such a young age, building our make-believe lives and all the while building a bond of strength that would lead us through our future battles. I believe that she is on my team and she is helping me as one of my Guardian Angels and honestly, I've had some pretty spectacular confirmations of that. I will continue to spin the colorful dial of "life," but it will be the real word version, and I will take everything that is given to me and continue to go down the path that is meant for my life until I win my fight and...this game of life. 

Thank you to Lachelle's Mom, Beth, for replacing my lost picture with this one.
She is beautiful and looks like an angel.