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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. 
                                                   


Tuesday, October 6, 2015

From Blonde to Bald

If you have read my blog before, then you know how I feel about ponytails. I would be willing to bet that I have spent about half my life with an elastic band wound tightly around my massively thick hair and if it wasn't pulled back, then I had a ponytail holder on my wrist, just waiting for it's opportunity to be called to duty. The better part of my childhood was spent styling the synthetic hair of my Barbies or baby dolls, usually, to end up with a too-big bow perched right on top of their heads, but always, always with a ponytail. And then one day, God blessed me with a daughter whom I adore for so many reasons, one of them being her patience in letting me do real braids, buns, or ponytails, to my heart's content.

So, it is only natural that my main goal following my 2014 brain surgery, was to regain feeling and movement in my hand and arm so that I would be able to put Avery's hair in the ever-coveted ponytail once again. It was within a week that I met and soon surpassed that goal. But then, soon after, it became a gauge of my progress once again. My hair had fallen out following radiation and was recently starting to regrow. To me, getting it long enough for a ponytail would mean that I was getting somewhere with the regrowth process; but unfortunately, I wasn't able to meet that second milestone because my hair had started slipping through my fingers, literally, soon after the first cycle of my chemotherapy treatments was complete.


The first time that I knew I was going to lose my hair, I kind of panicked. I rushed out to a wig shop and had them replicate the hair that was on my head. I wanted it to be perfectly matched so that no one would really know that I had lost my hair, unless I wanted them to. It ended up being a gorgeous wig that was the perfect compliment to what I would be losing, but it cost pretty penny, a few thousand of them. However, for the time being, it gave me solace and familiarity so that when I looked in the mirror, I wasn't staring back at an alien version of myself. Once I had a wig, my panic calmed down a bit and I was ready to take charge of the situation. I had a timeline of when my hair was projected to fall out and a few days before that, I decided to cut it and donate it while it was still healthy. I was able to donate two 10-inch ponytails to Wigs For Kids and that still left me with a short bob haircut; but it was only to last about two days until it started falling out quickly in soft fistfuls.

Once the radiation was complete and my hair follicles passed being dazed and confused, my hair eventually began to grow back. Very. Very. Sloooooowly. I originally anticipated a pixie cut by Christmas, but I barely even had a 5 o'clock shadow by the time the first snow fell last year. It was a chilly winter, hiding under my wig or fashionable head scarves, but eventually, when the spring flowers started blooming, so did my hair. I was so thrilled to have my hair coming back, that I hardly noticed that it looked like a reverse Mohawk. The sides were growing much faster than the top section of my head, so in essence, it was giving me a backward version of the famous rock and roll coif. Of course, to add a little insult to injury, the gray strands were growing the fastest.

When I learned that I needed to start chemotherapy, I knew instantly that I was going to lose my hair again. The type of chemo that I am on has more gentle side effects, but there was no getting around the most prominent side effect of hair loss. I finally had a full head of hair, but this time, I would face further hair-loss. It wouldn't just be just the hair on my head but also my eye brows and and eyelashes, as well. Chemo's job is to target all the cancer cells in your body. Unfortunately it cannot tell the difference between healthy cells and cancers cells so it ends up kills all of the rapidly dividing cells in the body and that includes both the cancer cells and the healthy cells. Hair follicles are some of the fastest growing cells in the body and so when the chemo kills them, there is nothing for the existing hair to hang onto and it prevents future hair from growing. So, if you notice me hanging around town with a crooked drawn-in eyebrow, or a set of fake lashes haphazardly hanging down my cheek like I'm sneaking back in from a late-night bender, cut me some slack.

Hair is just a thing and you will probably primarily hear that from someone who has never lost their hair. It seems like it would be a comforting thought to share, but for me, losing my hair was hard. Both times. I'm not always good at showing my vulnerability and instead, I tend to hold my feelings close to my heart, but I will admit that it was a blow; especially the second time, when I had come so close to resurrecting my hair styling tools, products, and even that always desired ponytail. Okay, maybe I wasn't that close to a ponytail, but a girl can dream.

I decided to take charge of my current situation again and lose my hair on my terms. I got to spend the summer with my cute little (mostly) red-ish colored, curly, pixie. It was sassy and it was something that I would have never dared to try if I would have gone about it with a traditional haircut. I actually became used to it and so when I tried on my wig for the first time in months, I didn't even recognize that blonde girl with long hair. Instead it looked, just as it was, as if I was wearing a wig. My hair was already short but I wasn't going to watch the strands float off my head and into an oblivion, so I decided to shave it. And when I did, I wasn't alarmed when I faced myself in the mirror this time. In fact, running my hand over my bald head was like shaking the hand of an old acquaintance.






Sunday, August 16, 2015

The Bald Mom At Preschool Pick-Up


... "I think your body is becoming immune to the hormone blocking medications and thus, it's time to take a break and come at things from a different angle for awhile. I think it is time to try using chemotherapy as a defense..."

Even though I was convinced that my doctor was speaking a foreign language, my heart had already figured out the translation and the tears were streaming down my face. This would be the first time that I ever cried in front of my doctor. This news was devastating to me because it means that the results from my latest scan were not what we had all been hoping and praying for.

My parents were in the next room and I waited several minutes to compose myself before joining them, but then I had barely set foot inside the door before I was able to choke out the word chemo and the tears started flowing again, my vision blurred by a mental montage of Avery's life and future. The scan showed that there is progression of the cancer in my liver. There isn't any new growth but the spots that already exist have increased in size and so, as we all know by now, that means it is time to change treatment. Again.

I needed time to catch my breath. I live my life in a delicate balance that is altered every three months. The anticipation alone is exhausting but then you add in the changes in treatment that are constantly wreaking different levels of havoc in my body by creating strange side effects or pain, it can be a daily struggle not only physically, but mentally. So absorbing this new <bad> news was really challenging for me.

Chemo is a scary word that has always been on the table but that we have managed to avoid for two and a half years, I've been very fortunate. The FoundationOne Testing, that I wrote about in my previous blog, still affords me several options but right now the cancer has things figured out and so we are wasting time by continuing to use the hormone medications. They are options for us to come back to later, but for now we need something to hit it harder and that something is chemo.

My chemo treatments will once a week for three weeks and then I get a week off. Then we repeat that sequence, repeat again, and then scan again.  Since I live in Mahomet and I receive my cancer care at RUSH in Chicago, the logistics had to be figured out so I can receive my treatments locally and avoid having to tear up the highway once a week.

Chemo has a bad reputation for terrible side effects and while the ones awaiting me are not all rainbows and sunshine (nod to my cancer girls), they are very minimal. There are actually several types of chemo and the one that I will be on, Taxol, does not cause nausea. Instead, I will experience fatigue and I will lose my hair. Although losing my hair again is going to be hard, I'm a smart girl and I know when to count my blessings, so I know it could be worse.

I have actually already completed, and rocked, my first chemo treatment. I survived and although I don't have too many complaints of those subsequent days, I know I'm stronger for it. I know I have an army standing behind me offering support, help, and prayers and I'm incredibly grateful for that, always.

I also know that starts my timer and I have approximately 17 days until I'm the bald mom at preschool pick-up. ;)



Monday, June 29, 2015

Does Crazy Cure Cancer? Cuz, I'll try it...

Sometimes I get tired of fighting cancer, it's like a job. A really sucky job with a tyrant of a "boss," literally threatening to syphon the life out of me while offering zero benefits, no days off, and lousy earnings. BUT, my cancer is not advancing, and even if it was, I would never stop fighting; so, time to pull the plug on the pity party.

In fact, I will try nearly anything to outsmart cancer. Aside from the traditional medicinal treatment, I have tried to come at the cancer from all angles by incorporating natural healing as well. At different times, I have changed my diet, done energy cleansing, Reiki, massage therapy, mediation, acupuncture, and concocted daily "green," drinks consisting of juiced kale, spinach, and asparagus topped with smoky flavored Turmeric Spice. Yes, it tastes as good as it sounds. Blech.

I feel like it is my responsibility to leave no stone unturned and so I pay close attention to all of the advice that I receive from well-meaning friends and family who once had an aunt, who had a cousin, who's best friend was an oncologist's daughter who suggest that I sit on turnips for three days. Ok, perhaps that is a slight extension of the truth, but I really do at least research and read about all of the recommendations that come across my proverbial desk.

Recently, upon my move back to central Illinois, I realized that some of my external contractors, for natural treatments, would have to change. I started by trying to find an acupuncturist. I do acupuncture for pain control and to relax so it seemed to be higher on the list of importance. After a few unreturned phone calls, I finally found a place that I thought would do the trick. It was a traditional Chinese medicine place that seemed legit. Enough. I made my appointment for the same day and was excited but a little nervous (being a human pin cushion tends to have the latter effect on me).

The appointment wasn't quite what I was used to, but I figured it would be slightly different to go from a white female chiropractor to a male traditional Chinese medicine specialist, so I was open to the change of the environment. He started by having me lay face down so that he could treat my back pain (Stop it! This is natural cancer treatment, dirty minds need not apply!). He told me that he would need to use a slightly larger gauge needle to effectively reduce my pain. I wasn't sure what exactly that entailed, but I decided to be brave so I told him to go for it.

<Silence>

<More Silence>...

Like 45 seconds of pure silence and just as I'm about to pop my head up to investigate, it happens... I was stabbed with a Samurai Sword! I yelped like an injured animal but let him continue to do it three more times, the final time being the worst. He told me that he was finished and I could get up, but I just couldn't. I lay there with my face buried in his stupid traditional Chinese table and silently cursed him for the pain he had just subjected me to. I was stuck by needles and/or had my blood drawn 17 different times when I was in the hospital for my brain surgery in 2014, and I'm not sure which one that I would rather experience again...

Truth be told though, my back pain did subside for a few weeks. Will I ever go back and do that again? I'd pretty much hang from the ceiling by my toes if you told me it would cure cancer; but if and when I'm ready to dip said toes back in the acupuncture pool, I will definitely stick to something a little less "traditional," and in the meantime, I will plug my nose and drink twice the amount of green juice to make up for it. Cheers.