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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

 

Sunday, February 1, 2015

White Girl Living In An Italian World

I was the white girl and they were the Italian family; but somehow, maybe over espressos, vino, and giant plates of pasta swirled with Nonna's special sauce, I was voted in. My official title was the nanny and while I thought it would be a temporary job, I ended up working for the Palazzolos for five years. When I started, Isabella was beginning full-day Kindergarten and Gianna had just turned one and was learning to walk, still unsteady on her feet. Now, high school is on the horizon and they're constantly enthralled with their virtual worlds of Snapchat and FaceTiming with friends. My rank of importance might have dropped a bit, but the bond grew deeper. They will always be my girls and Tony and Angie are two of the most wonderful people I have ever known. It has evolved from me watching their babies, to them watching my daughter sometimes. We have become family and not in a creepy, My 5 Wives, kind of way. Tony is like the older brother that I never had. He was always a great person to work for, he looks out for me, and he gives great advice and I have a lot of respect for him. He likes to wave at imaginary people to trick you into looking, which he thinks is hilarious, and he also teases me about being a white girl from the sticks. I may have to consciously make an effort to not let my eyes roll out of my head when these two jokes repeat themselves, every day, but I try to do it when he isn't looking so as not to bruise his Italian cannoli-style ego (hard exterior, big softy on the inside).  He is Avery's Zio Tony and he is infamous for sneaking her chocolate, letting her binge-watch Mickey Mouse, and helping her perfect her Australian accent.

To say that Angie has become one of my best friends would be an understatement. It probably helps because she thinks I'm wicked smart. I'm not, but I throw out a big vocabulary word here and there to keep up appearances. In reality, I learn a lot more from her, especially when it comes to being a good friend. When, my husband decided he wanted to end our marriage and I couldn't bear to be in my empty house, she sat on her couch with me while I cried. When I lost my job, she told me it would be ok and they could help me. When Avery was born, she was one of the first people at the hospital with a cake that she had planned to serve at the surprise baby shower she was supposed to be hosting for me that night. She threw me a beautiful party for my 30th birthday. And when I was diagnosed with cancer, there she was...standing outside her car, waiting for me as I returned from the doctor. She doesn't ask for anything in return because she is just always giving of herself. She will tell you that its because I cared for and loved her daughters; but, that was the easy part. Living up to her and Tony's generosity will be something I can never pay back but will always pay forward.


This was Angie's perspective:

I was waiting for Ashley to text me to tell me her biopsy showed it was nothing! I mean I knew it could not be cancer because she's 29! You can't have breast cancer at 29! Then BAM, her text said it was stage 4 and it was even in her bones! I don't recall the exact time when we knew that! But I couldn't understand how that could be! I immediately got in my car to meet her at her house! I got there at the same time her and her mom did and ash was not freaking out and immediately knew I couldn't either! Even though deep down I was thinking the worst in my head! I looked at her and felt her confidence and strength and I instantly felt that this will all be good! She is going to be fine! Because she felt she would be fine!! While getting other opinions she always maintained that positive attitude and made sure to keep us all informed of every step! And, whether a text or a call she would always say that she is going to beat this! So I would believe nothing else! I won't lie, there have been times along the way that I have been scared because the thought of losing someone that is not only one of best friends but has become my family is devastating! But, ash doesn't allow for any negativity or fear and this journey has enforced that for me as well! She is truly a fighter and will be a miracle!!




Wednesday, November 19, 2014

Dear Avery

My most recent MRI and Pet Scan results, in October, were split. Since finishing radiation in July, I've lived with a slight fear rooted deep inside that it would come back to my brain. I'm more than thrilled to announce that the MRI of my brain showed that everything is clear! It is a giant relief only slightly clouded by the fact that my PET scan results were not as gratifying. Unfortunately, there are signs of increased activity in the areas that the cancer already resides and additionally, there are three spots on my liver. It wasn't quite the homerun that I was hoping for, but it is also nothing to get in a frenzy about. Spots have appeared and disappeared from my liver before and I'm confident that the change in medicine will bring about a positive change and better results in 3 (now 2, I know... I'm late...) months. In fact, I am already able to sense a difference in my body and I'm feeling more like myself again. I missed myself. I didn't realize how hard my brain surgery, radiation, and other events had hit me physically...and emotionally. I got caught up in big frightening medical words and I tripped. But, I'm here now and I've gotten back up and dusted myself off. Although, it gave me a lot of time of reflection of just how precious life is, for us all.... The delicate balance makes me think a lot about being a mom. I can't even remember what my life was like without Avery in it and if I only had today to tell her as much, this is probably what I would say...  


Dear Avery, 

I'm stuck. I'm stuck between wanting time to slow down and wanting it to speed up. I want to live in the present and not wish away precious moments of your childhood. But... I am also terrified that I won't get enough days with you as you grow up. That is what I am most afraid of, my sweet girl. It's an unfortunate gift that cancer has given me, to consciously live in the moment and never take a day with you for granted. You have the most beautiful way of loving life and having it love you right back. I hope you always have that zeal about you, with your blonde curls shaking furiously back and forth as you confidently assert your opinions. And when those opinions are not of the majority, your attitude takes charge. Your attitude translates into a strong will and I have no doubt that it will help you leap effortlessly over any obstacles you face in your life. Be sure to use your strength to help other people, when you can, and to hold unwavering to what you believe in. That being said, your strongest belief must always be in yourself. You can do, achieve, or be anything that you want in life as long as you always believe in yourself. 

Your big inquisitive blue eyes and soft still-baby skin are only a sliver of what make you beautiful. You have to match that beauty with a loving and giving heart. You must always say please and thank you, there are no circumstances where using your manners or showing gratitude will be out of style. Always be patient and kind, with a heart for helping others. If someone falls down, be there to help them up; and, be assured that if you fall down, I am going to be there to help you up.

Life is certainly not easy and there will be heartache. I wish that you won't ever have to know what that feels like, but it will rear it's ugly head throughout the seasons of life. Just always remember that we don't count our challenges or struggles, instead, we focus on our blessings. It took me 28 years to understand exactly what that meant, but then I met you and now I know. I know how to find the positive in every day and I know the sun shines brighter on my side of life because you're here. I know. You are special and I was meant to live this life with you. I wouldn't change anything about the way things have unfolded because the love I have for you is so much bigger than cancer and so much bigger than a lost love.

I know how lucky I am to have been chosen as your mom. I know that you are like me, in a lot of ways, and I am humbled to be worthy of being that example for you. Though, I am most excited to watch you become exactly who you are meant to be. I know that life isn't promised and each day is precious. I promise to live in the present moment with you, to envelope all the giggles and catch all the tears. And, every time that I kiss you goodnight, I will continue to thank God for you and I will pray for the mommys and daddys that don't get to do the same thing.

I love you today, tomorrow, and always.Oh, and 65,000 kisses worth, my Avery J. ;)

Love,
Mommy











Tuesday, August 26, 2014

Isabella

Before I became a teacher, I worked as a nanny, it was 2007 and Isabella was 5 and just beginning kindergarten and her little sister, Gianna, had just turned 1. It was a job that none of us anticipated it would evolve from happy work environment into happy family. But, that is exactly what ended up happening! I worked for them for 4 years and Bella is now 13 and boy crazy, and Gigi, 8, and dance crazy. They were in my wedding, they have supported me through my diagnosis, and they are cousins to Avery. I love them like they are my own and I always will. Bella is older and had a better understanding of my situations and life happenings, in all aspects. She is wise beyond her years and supportive of me in the sweetest and most sincere ways. Here is her perspective on my diagnosis....



    Hi, I'm Isabella. I've known Ashley since I was about 5 years of age. She was always there for me when it came to brushing my hair to taking me to all of my commitments. She is a wonderful person and I love her so much. She is such a positive person to be around. She is definitely like my second mother. A year ago I found out the worst news of my life. I was at work with my mom when she told me Ashley had a 50% chance of having breast cancer. I was sad, angry, and terrified. I knew she couldn't have cancer, until a couple days later it became real. They officially diagnosed her with stage four breast cancer. I was in shock, knowing that a person you love is sick can be very painful. I cried a lot over thinking about the things that could happen, But today it's a blessing to see her happy and healthy. Kicking cancers butt! I'm so proud of her for fighting through all this even when things were at its worst. All of her progress is amazing and I can't wait to see what the future has in store for her! 


                  Love you, B!!! 

Monday, August 25, 2014

Radiation

I think the first time that I let cancer scare me was immediately following my brain surgery. Up until then, I felt like I was the one in charge and I wasn't going to let it overtake me physically or mentally. But then, it did overtake me physically. When I woke up in the ICU, following my surgery, I realized that I had lost mobility of my right arm. The tumor had been located on the left frontal lobe of my brain, directly on the area that controls sensation and movement for the right side of my body. The surgeon very skillfully removed the tumor but he said that it was stubborn and sticky. The good news is that by removing the tumor, I would not have any repeat episodes. The not so good news was that, as a result of the stickiness, I didn't have use of my right arm and although he felt confident that I would regain use; but, he could not guarantee that it would come back one hundred percent. I had nicknamed it my "caveman arm," because my knuckles could have been dragging on the floor and I wouldn't have known it. On the first day after surgery, I almost shut my arm in the bathroom door and when getting back into bed, I sat on it. It was limp and lifeless and my hand was clenched into a fist that I could not pry open without help from my left hand. I was frustrated and terrified and the only thought continuously running through my mind was that I have to be able to put Avery's hair in a pony tail. That sounds funny, doesn't it? It seems like a somewhat menial afterthought but as a single mom to a little girl, its actually a part of our daily routine and I was not going to surrender my independence so easily. I began working my hand diligently and it was quickly discovered that the strength was there but the dexterity needed a lot of tweaking. So, every chance I got, I would pry my fingers open and fold them shut until they relearned the motion on their own. I was only in the hospital for three days but by the time I was discharged, I could raise my arm, make a fist, and straighten my fingers without any assistance. It still took some time after that to really get back to normal and it was more than once that I swiped things off of the counter top. My brain was relearning to communicate with my hand that you actually have to let go of the glass after you set it down. Who knew?? I'm not a very patient patient, but I feel very fortunate that my mobility completely returned; it only ended up taking about a week and a half, but it felt like an eternity. It's something that I didn't even realize I took for granted but I will tell you that I was more proud of that first ponytail that I put in Avery's hair post-surgery, than I have been of anything else. Ever. Except finally being able to type a text message message with both hands again, might have been a close second...

If I had just had to recover from only brain surgery, I probably would have boasted that it was a walk in the park in comparison to my triple doozy of a surgery that I had last fall. Unfortunately, I didn't have time to revel in the glory of my recuperation because my follow up radiation began shortly after I was discharged. It was decided that I would undergo full brain and neck radiation to get any cancer that was left behind from the surgery. I would go daily, during the week, for ten days, with each session lasting about fifteen minutes. They warned that the side effects wouldn't kick in until after I had completed all ten rounds. I went into my radiation experience very naive. I had always been under the impression that radiation was somewhat of a subtle treatment but boyyyyyy was I ever wrong! Since I was having brain radiation, I had to wear a mask so they could mark the areas that needed to be specifically targeted with each visit. The mask is somewhat reminiscent of what one might done as they prepare to face their opponent in a fencing match. Although my opponent had the upper hand in this match because I was truly unprepared for what was to come. The actual radiation appointments were fairly unassuming. I would pop into a room with a setup similar to an xray table/machine. I would lay down and they would put my mask on, which, if you are the least bit claustrophobic, would kill you. They attach the mask to the table, so you are essentially trapped, and the mask fit so snugly, that it required effort to even blink my eyes. Luckily, I'm the type of person that can mentally remove myself from these types of situations so I would close my eyes and listen to the machine moving above my head, getting itself into position. Everything would get quiet before the cobalt blue lasers would shine through my eyelids and I would develop a metallic taste in my mouth. Then, just as quickly as it began, it was over, and I would blink at the brightness welcoming me back into the room and then, be on my way.


Friends and family modeling my radiation mask. It was given to me as a keepsake, or to run over with my car, whichever...
                 

During the course of my radiation treatments, I experienced a lot of nausea and fatigue; but, it wasn't until after I was finished, that the side effects really began to pummel me (just as my doctor warned me that they would). Each side effect hit with a vengeance and I was knocked on my ass. HARD. I was essentially burned by the radiation and it left my throat raw and sore. It was like strep throat multiplied by ten and I could only eat soft foods; but, even those proved to be too painful to swallow and so I choked down smoothies for about ten days to sustain me. But even when I could start eating textured foods again, it didn't really matter because my taste buds didn't exist anymore. If someone would have conducted a blind taste test on me, it would have only been by an almost-non-existent aftertaste, paired with being a self-proclaimed fat kid at heart, that I may have had a chance at guessing correctly. It zero fun and the easiest seven pounds that I have ever lost. <--Silver lining?

The zip zap and zing of the machine also left me with deep inner ear discomfort, a head/forehead that looked like I was peeling from a sunburn so terrible that I must have been up close and personal with the giant fiery orb itself, more nausea, more fatigue, and a partridge in a pear tree (disguised as scalp sensitivity). Oh, and I lost my hair. Apparently, whenever you get something radiated, you lose the hair on that part of the body. So, brain= head. Not sure, why I couldn't have gotten thigh-cancer instead and thus, not have to shave my legs...but alas, the odds have yet to be in my favor. Disclaimer: Don't travel to Vegas or try to get out of a speeding ticket with this girl.

However, I am happy to say that forty-two days post-radiation, I feel like me again! The symptoms have subsided with each passing day and my newly (and violently) exfoliated skin has never been so soft! Last weekend I had a follow up MRI, a THREE hour long MRI, that will make sure all the lingering ooey gooey cancer cells have been evicted from my brain. I get those results tomorrow and even though the recent setbacks have left me feeling a bit betrayed by my positivity, I still have faith that everything is fine. Avery and I have our "normal," back and it's only going to get better from here. I'm only going to get better from here.


First week after radiation, sporting my new wig and matching smiles with my girl!

Lunching with my lady!


...Stay tuned next time for the introduction of Avery's and my new roommate, Wilma....the wig. It's taken a bit of adjusting as most new relationships do, but we are finally welcoming "mommy's hair," (this wig basically has it's own identity in our home, hence the loving nickname) as a member of the family. I figured it was an easier transition than a puppy, at this point...



I came into the room and found Avery talking to my wig. I couldn't make out what she was saying, but I think they were getting acquainted.