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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.

FoundationOne

It is probably a good thing that I have spent so much of my time in and out of the hospital and doctor's offices, I think I may have picked up a thing or two and maybe, just maybe, I can resuscitate my blog after six quiet months.

The truth is that I have had a lot of heavy stuff on my plate and I just wasn't in a creative head space. I wasn't ready to get down and dirty with the details of everything and felt a lack of inspiration. But, I'm here now and want to share some cool stuff that I have learned about my cancer.

I recently participated in something called FoundationOne testing. I say that I participated, but it actually required nothing more from me than to grant my permission for a sample of my biopsied tumor to be sent away and studied. FoundationOne is individualized testing that identifies that genetic makeup of my specific tumor.

So, that means that some medical professional has to unlock the broom closet where specimens are kept, brush away the cobwebs, shoo away the rats, and search for Ashley Barrett's original recipe booby tissue that was snatched from me back in early 2013. They then take a sample and send it off to somebody, somewhere, who I imagine must be very smart, to intricately study each strand of DNA that makes up my specific cancer. Just mine.

This isn't genetic testing that questions whether or not I carry a Breast Cancer gene that could run in my family; I already know that I do not have that, and this is different. The point in having this specific testing done is to help my doctor's understand  my cancer is made up of and to help them determine the best and most effective way to treat me. So, the strongest genes, aka the "molecular growth drivers," of my cancer will be listed first and provide a relevant therapeutic option to help target and fight that gene specifically. There is a list that goes in order of importance as far as what will be most effective.

FoundationOne is newly used for Breast Cancer and has already proven to be beneficial for me. When I received my results, they showed the most prominent mutation to be most effectively treated by the medicine that I am currently on!!! If and when my cancer decides to take a detour or get off track, the results of FoundationOne will continue provide me with additional options that are tailored to my needs and will focus on battling the biggest sources.

This testing is an advancement that continues to provide me with the best care possible and allows for me to be treated as a 31 year old individual, instead of being thrown into the masses of what Breast Cancer used to look like. I hope it means that new stuff is continuing to happen everyday and that while I keep my head up and maintain a positive outlook, that the best is yet to come.

A cure.



Monday, February 2, 2015

Miraval

As I have mentioned before, I was feeling a little deflated by the end of this last summer. Recovery from brain surgery and radiation, as well as dealing with the reality of the cancer having spread and dramatic happenings in my divorce were weighing heavily on my mind. I didn't feel like myself, instead I felt sad and scared. My fear always compounds itself because on top of the original fear, I become afraid of being afraid. That doesn't even make sense, but it happens. I have always felt like the stress of being upset would manifest physically in my body and create more cancerous chaos. I mean that's how we got to this point, isn't it? Well, maybe, maybe not. I don't blame it all on stress but I do believe it plays a part. I believe in a mind-body connection and I knew that mine was out of balance and I needed to reconnect with myself, so I decided that I wanted to go on a retreat.

I wasn't exactly sure what type of retreat I was looking for or if these resources even existed, so I did a Google search. Time and time again, I would be brought back to the same expired websites or dead ends with outdated information. Nobody wanted to host my version of a sabbatical and truth be told, I wasn't looking to be dumped in the woods to hike my way home or to go white water rafting with my cancer sisters who would become my "breast friends." No, in fact, I wanted to be alone. I wanted to collect my thoughts and piece myself back together so I could revitalize and recharge my positivity and fighting spirit.

Aside from being alone, I knew I wanted to be somewhere quiet where I could practice meditating and write, or read, or sleep, or just do whatever I wanted, whenever I wanted to do it. I wanted massage therapy and stretching or yoga for my aching bones and I just wanted to breathe different air. This was a tall order and it was virtually non existent. I was resigned to the fact that it wasn't going to happen when a real life game of telephone got started among people close to me and this person told this person who told this person, that I didn't seem like myself lately. It was true, but I didn't realize it was that noticeable. Well, you've met my friend Angie, in my previous blog. The operator of the telephone game got to her before it made it's way back to me and she exhausted her extensive lists of contacts trying to help me, but ended up not having any luck either. However, in her typical "never say die" fashion (Oooh, is that only funny to me? Sorry, sorry), she pulled out all the stops and she planned and paid for my dream retreat, right down to taking me to the airport at five o'clock in the morning. Do you have an Angie? If you don't, put down this blog right now and get one immediately. Even if its a miniature pocket-sized version, carry her everywhere and never take her for granted.

So, mid-fall, I boarded a plane alone and I headed out to Miraval Spa in Arizona.  As soon as I stepped into the Arizona air, I felt my shoulders relax a little. The hour shuttle ride was narrated with stories about Oprah's last visit, how obnoxious the Kardashians were during their visit, and that Gwyneth Paltrow is sweeter than she appears. I couldn't believe that I was going to spend the next three days in such a cool place. I was so excited that I could have swung from the ceiling! Oh wait, I did swing from the ceiling when I was enveloped in a silk fabric, (similar to those used by Cirque Du Soleil artists) and did aerial meditation with a lavender pillow over my eyes while listening to a woman play music using glass bowls. That was real life and it was my favorite experience and the most relaxing thing I have ever done. I enjoyed it so much that I've even considered replacing all the chairs in my parents' house with suspended silk swings... The wheels are turning, people.

Despite being a spa, I chose Miraval because they offered a lot of energy healing that I was looking for. I would wake up early and watch the sunrise over the Arizona mountains while I was in stretching class, I walked the meticulous grid work of a stone labyrinth carefully placing my rocks of intention among so many others. I also napped in the warm sunshine by the pool, I started and finished a 400 page book, did different types of energy cleansing and healing and got a couple awesome massages. My only mistake was signing up for a hour stone massage. That sounds really cozy and relaxing, doesn't it?? I thought so too, until I realized that every hot stone that touched me would cause huge flares in my hot flashes and crank up my body temperature by a zillion degrees.

Even though time flew by too quickly, I was able to look in the mirror on my last day and see a face that I recognized again. The dark purple circles under my eyes had lightened and the knot in my stomach, that once could challenge any boy scout, had finally untangled itself. I had found exactly what I had been looking for in that three days, I had found me again. Instead of just ducking and dodging the blows, I simply shed the heaviness of the negativity and left it to die in the desert. I'm back in a good place and ready to fight harder than ever, just in time for my second Cancerversary.

Mirival
Photo Cred: Kristin Lenda