I have a special edition of Alexa Loves AYA’s for you.
THIS DEDICATION AND INVITATION IS OPEN TO EVERYONE, NOT JUST AYA’S!
I was really, uh, I guess you could say “inspired” (cough) by a story I heard this week. It was a combination of cancer, ignorance, and sheer hilarity. Something we (and serious/chronic illness) know all too well. I picked out a song that was just as silly as those encounters are. It is Tacky by “Weird Al” Yankovic.
I want to call out those comments for what they are: TACKY! Easy Cancer?Tacky!You’re Lazy?Tacky!My Granny died from that?Tacky!Want this one weird trick in your DM’s that cures your cancer/illness?Tacky!Sending flowers and a 3 page letter to guilt a cancer patient? SUPER TACKY!! Just to name a few!
Unfortunately, I can’t take away these comments from you as much as I would like to for the both of us. But I CAN try to make you laugh and remember this song when they come! When people make comments that are usually hurtful or ignorant at the very least, please remember they are just as tacky the lyrics in this song AND the music video.
I want to hear about YOUR tacky comments/experiences! Let me know on Social Media or here on the blog.
Thanks for tuning in to this edition of Alexa Loves AYA’s and spending part of your evening with me. Feel free to send a link or tag on social media if a loved one needs to hear this. I look forward to dedicating another song to you and expressing my more of heart next week! I can’t wait to visit with you again, dear friend.
Welcome back to Alexa Loves AYA’s! Each week I dedicate a song to adolescent/young adults (AYA) with cancer or a serious/chronic illness and share some encouraging words along with it. I usually post on Saturday, but today is the two year anniversary of when Hurricane Harvey hit Houston, Texas. Since I am a patient at MD Anderson Cancer Center in Houston, I wanted to share some thoughts about Harvey. I will be talking more about it tomorrow, but this song is also dedicated to the incredible people of Houston.
I have a real treat for you today! I actually just learned about this band. When I heard this song the first time I couldn’t help but think of AYA’s. It quickly became a personal anthem for me. My song for you today is “On The Inside” by GFM. They are a rock group made up of sisters. I know it may be more intense than you are used to, but give it a shot!
I love seeing metal screaming with their girly and glamorous look. They call it Beautycore!
I dedicate this song to you while you are in the process of rebuilding your life in the aftermath of your situation. I know cancer or illness is a hurricane that throws everything into chaos. Your job, education, relationships, social life and dreams. It doesn’t care! I remember visiting Houston for the first time after Hurricane Harvey. You could see how high the flooding hit. But what struck me the most was the trees and flowers lacked color, like their spirit was drained out with the water. I saw places I knew so well become empty with “Closed for Renovations. God Bless Houston!” signs on them. To say it was devastating doesn’t begin to do it justice.
Houston isn’t exactly the same as it was, but guess what? Those closed establishments came back with booming business. The water finally dried out. Color returned to nature after all. I don’t know what rebuilding your life looks like for you. It could be anything from trying to get your pain under control in daily life or picking up where you left off in school for your career dreams. I want you to know that I believe in you as much as I believed in Houston! I believe you ARE rebuilding. While It might look different than your previous life did, I believe you will survive the challenge of putting things back together in a way that works for you. There IS so much left to your story, even with the new found physical and emotional scars. If it helps to scream this song in the mirror as a reminder, go for it! I’m in the process of rebuilding my own life right beside you. We will get through this!
FYI: GFM has some fun vlogs from touring that you might enjoy watching if you are bored at the hospital or can’t sleep. You can check them out at their YouTube page.
Thanks for tuning in to this edition of the Alexa Loves AYA’s and spending part of your evening with me. Feel free to send a link or tag on social media if a loved one needs to hear this. I look forward to dedicating another song to you and expressing my more of heart next week! I can’t wait to visit with you again, dear friend.
My dear friend, there you are again! Welcome back to Alexa Loves AYA’s. I’m so glad you came back to visit me.
I have a song for you that was super popular in the early 2000’s. Have you heard it before? If not, let me introduce you to tonight’s song, The Middle by Jimmy Eat World.
Have other people written you off? Even worse, have you written yourself off? Do you believe it’s over for you? I want to encourage you today and share why I don’t think that’s true! Here is a thought I want to share:
Labels can be painfully accurate about someone’s past while missing their future by a mile.
Let’s make a quick edit to that:
A diagnosis can be painfully accurate about someone’s past or current abilities while missing their future by a mile.
I am confident that no matter what you still have something to give, even if it looks different than you had imagined. I understand that your dreams may have required modifications or were forced to change entirely. You are not disqualified! Although you might not be there right now, please don’t write yourself off yet! Here is a good perspective I learned: Everybody has to face this in life eventually. You are just in the middle of figuring out what’s next and it takes some time. I am really looking forward to what you will achieve dear friend, and don’t forget about me when you get there!
Thanks for tuning in to this edition of Alexa Loves AYA’s and spending part of your evening with me. Feel free to send a link or tag on social media if a loved one needs to hear this. I look forward to dedicating another song to you and expressing more of my heart next week! I can’t wait to visit with you again, dear friend.
Welcome back to Alexa Loves AYA’s! Tonight is interesting because while I have ONE song dedication for you, I have TWO versions. Since AYA’s are a wide age demographic (15-39), and I include former AYA’s too, I wanted to provide an option for either spectrum you’re on.
Tonight’s song is True Colors by Cyndi Lauper (original) and a cover by Justin Timberlake and Anna Kendrick from the Trolls soundtrack. I personally grew up hearing Phil Collins’ cover on the radio. If that’s your jam, by all means, pull it up!
Do you get more questions about your diagnosis than about what you’re up to? Have you dealt with whispers of “Hey, it’s them. They have___.” while they forget you’re an actual person? I have!
I want to make a quick note on this, most people DO(usually)mean well! They care enough about you to ask, but sometimes they lack the self awareness to realize that it appears it’s all they care about. Others may not understand how off the balance is between talking about your diagnosis and talking about YOU! They are two separate things.
You aren’t your IV drip, mini home pharmacy, body part loss, or whatever else you can think of! You are how your eyes light up when you’re happy. You are how giddy you get geeking out over your interests. You are how you like your coffee or tea a certain way. You are how you gently love on a furry friend. You are how kind you treat the ones you love. None of that has anything to do with your diagnosis! These are your TRUE COLORS!
Dear friend, I want to encourage you this week to let your true colors show. Like redirecting a conversation from your diagnosis to something you’re interested in, or a project you’re working on. Don’t be afraid to take the spotlight off that topic and shift it back to who you really are and what you enjoy. The world makes us all crazy at times, but know I will continue to be here and see your true colors.
Thanks for coming to Alexa loves AYA’s and spending part of your evening with me. Feel free to send a link or tag on social media if a loved one needs to hear this. I look forward to dedicating another song to you and expressing more of my heart next week! I can’t wait to visit with you again, dear friend.
Last week I ventured to part of the hospital that I have zero experience in, and I have been to several areas. From getting my Thyrogen injections at outpatient chemo to reconstructive surgery, my MD Anderson passport is filled with many stamps to say the least. Sure, I passed by this clinic briefly when my endocrine oncology surgeon Dr. Elizabeth Grubbs was part time at Flex Clinic / Gastroenterology. Going in is completely different. Where am I talking about? The Robin Bush Child and Adolescent Clinic.The AYA clinic is located here, think of it like a clinic in a clinic.
Here I am outside of the clinic.
I have been a patient at MD Anderson since 2017. The AYA clinic opened in 2018. I am writing this in 2019. I attended the 2019 MD Anderson Young Adult Conferenceand was able to meet some of the staff there. I requested a consult from my awesome oncologist Dr. Jeena Varghese at my home clinic Endocrine Center. She was more than happy to refer me and we discussed some AYA related issues. The referral is painless, they just put in the system and it will get scheduled. I had to reschedule for a month later but they could have seen me that week.
Now, if you are on the pediatric side of MD Anderson, just skip ahead. You already know what I’m about to explain. I’m talking to you: adult side of AYA!* I’m not trying to scare you, but to prepare you. My dear adult side, you know MD Anderson. Its formulaic to say the least. And if we are being completely honest here, it’s almost comforting. You could go to any clinic any pretty much know how it goes, with the exception of unfamiliar imaging or procedures. Even my two surgeries were nearly identical. Darling adult side…throw that out. THROW IT OUT I SAID. There will be a new waiting room just for us very soon, but until then your girl is going to walk you through this. We are a team after all.
(* In the AYA community, we use the terms “pediatric side” (treated at pediatrics with children) or “adult side” (treated at “adult” clinics with significantly older patients) to identify where we are treated. This is a complicated issue because where you are sent for treatment varies by hospital and even cancer type within the same hospital. Until AYA’s have our own clinics/hospital floors we will continue to use this identifier.)
You will walk into the clinic for check in. Do not let the noise fear you, this assures that you are in the correct place. BE STRONG! There is no iPad/electronic sign in. Instead, there is a table in the front area to the right with paper slips that you will fill out and return to the front desk. I suffer from chronic directional issues so it took me more times than I would like to admit to find this table. This is a me problem, not clinic issue. Thank you front desk staff for loving me through that challenging time. I filled out my paper slip (essentially what you would do on iPad) and returned to the front desk. I sat down on significantly more comfortable seating than in any adult clinic I have been in. Those couch things are NICE.
I was called up to the front to get my wristband, be prepared to answer more infection control related questions than you do in adult outpatient. They will be talking at a much higher volume than you are used to. They are not yelling at you, this is the default tone because the clinic is loud. Unlike adult side, your band will get a sticker. I know that is so small, but it made me so happy all day! I wish adult outpatients would do that, and boy I have some ideas. If you go to radiology you could get glow sticker. Or a ribbon sticker for whatever home clinic is. Make this happen guys!
My patient wristband with sticker!
My dear adult side, your waiting room experience will be much different. You will get a concert experience from the xylophones. Nurses may come out chasing down patients. Names may be screamed. Random shouts of joy will come from the playroom. You aren’t in Kansas anymore, baby. But, there is something wonderful in knowing that MD Anderson has a completely different universe tucked away. I say embrace it! I would have NEVER experienced this in my cancer care and now I feel more connected to my pediatric side AYA’s. In some way this brought a much needed balance of youth to my sterile 50-and-up cancer experience. I look forward to returning. I wanted to let you know this if you are prone to anxiety at noise or chaos, which I respect. But good news: you probably won’t have to wait long at all! You heard me. Your wait at pediatrics will be NOTHING compared to what I KNOW you have experienced in adult land.
Rest easy though, your waiting room paper work is exactly the same as adult. You will be called back to the vitals room. Go ahead and take your shoes off (why don’t we do this in adult?) since they will request it. It will be typical MD Anderson vitals but your height will be checked too for the ~full pediatric experience~. You will go back to a exam room while passing by colorful walls and adorable art work. In Pedi-Land your name will be on a dry erase board on the door of your exam room. And wouldn’t you know, they had “Alexa” in a beautiful purple color waiting for me. Who found out my favorite color (I will nominate you for a STAR award)??
The nurse will ask you the typical MD Anderson clinic visit questions you are used to, but I was asked several additional questions related to symptoms/side effects. You got this! They will apologize for the “wait” you are about to have of maybe 5 minutes. What on earth? Do you not know I have waited 5 hours to see a doctor before?? Gosh.
On your MyChart you will see 3 things scheduled. 1. Main AYA Provider (This will either be Dr. Michael Roth or Dr. John Livingston) 2. AYA Social Work Consult (I believe they have a few social workers so this might vary? I am not completely sure.) 3. I forget exactly how this was listed in MyChart, I think AYA Vocational Consult? Who you will see for that is Sandra Medina-George. Pay no attention to the order scheduled, it doesn’t matter. You will be in the same room and they will come in and out whenever they are available. Since I am telling you my experience, I will share in the order I had:
Vocational Consult with Sandra Medina-George: I have on a very high up and credible anonymous source that Ms. Sandra is so beloved that she is not allowed to retire. In fact, if cloning becomes commonplace I assume the AYA clinic will attempt this instead of hiring someone else. She can help with anything career related, including helping you find a first career or with a career change. She can also help with finding a university or with AYA related university issues. I learned about some testing that I will do at a later time. She also educated me and answered questions on career and education. I really enjoyed our visit and look forward with working with her so I can live my best life. Trust me: she won’t judge you. This is a safe place to talk about your goals and where you have been or are, even if you aren’t happy with where things are right now.
Social Work: I will leave out name since it is not listed on the AYA clinic page and do not know if identification would be an issue. She was incredible and I gained a lot out of this. I learned about resources I was unaware of, and the best part? I got a question answered that bothered me on a daily basis. I think I was too scared to ask anybody before but she answered it. I am happy to report that I can state that I am still on active treatment for cancer vs saying it’s complicated and blabbering on. I told my family when I got home that this was one of the best parts of my visit. You will still have your home clinic social worker, but now you have two!
Consult with Dr. Michael Roth: I really enjoyed meeting with Dr. Roth. He is warm and compassionate. He deeply understands AYA issues and was very reassuring/encouraging to me. It was Jamaican chicken soup (my favorite chicken soup) for the AYA soul. I am intentionally leaving this open ended because your medical consult will vary GREATLY depending on your diagnosis. But, I’m your thyroid cancer gal and I will say he was great for thyroid cancer. Endocrine Center, refer with confidence! I will also go out and co-sign Dr. Livingston here. He spoke at the conference and seems just as committed to the cause. I really believe you will be in excellent hands with either doctor.
I left with lots of papers, resources,and my love tank filled. I want to make something very clear: You are welcome here! I NEVER felt less than due to being a thyroid cancer patient by anyone! I feel Dr. Roth was just as concerned about me as I assume he would with any other cancer type.Point goes to AYA clinic.
If you are an AYA, REGARDLESS OF CANCER TYPE, you need to go. If you are an AYA on the adult side, YOU REALLY, REALLY, REALLLLLLLLLYYYY NEED TO GO!
Let me answer some questions:
I got diagnosed with cancer and I’m overwhelmed just looking at my MD Anderson appointment schedule. Is it worth adding the additional visit at AYA to the chaos that is my new patient life? YES, YES, AND YES! Take this from somebody on adult side for 2 years with no previous AYA support. If you have the opportunity to go as a new patient RUN, don’t walk, to this clinic. If I had this option my cancer adventure would have been completely different. Start yours off this way instead.
But Alexa, my cancer is/was being treated just fine in adult land, do I really need to go? YES! ESPECIALLY YOU! You saw me state I have the best oncologist ever earlier in my post, right? And I’m saying you need to go! You keep your oncology team, this is supportive care. You will benefit greatly.
I didn’t see anything in your post that would help me, why should I go? Because, this was my appointment. This is so hyper tailored that we could have completely different visits even if the formula is the same. I bet if you asked the staff they would probably tell you the same thing. I genuinely believe you can gather some benefit from a visit even if I didn’t cover it. Go.
I’m on the pediatric side, can they help me too? Okay, I can’t answer this 100% because I don’t know what you are offered by default on the pediatric side, but I’m going to say yes. There is so much they can do I don’t see why they can’t help. I will probably ask someone there for a better answer to this question.
(Any possible question I didn’t answer here), should I still go? Yes. I cannot think of a situation where I would say nah, don’t go. This clinic is incredible and my only complaint is I could not see them when I was diagnosed.
I am so glad MD Anderson is leading the way with the AYA clinic and it is my sincere hope that AYA’s will have this experience wherever they were treated in the future. I will report back to my home clinic on my positive experience and hopefully help other adult side endocrine AYA’s by doing so!
Well, it was finally time for me to break out of my metaphorical cocoon. I’ve had several requests for a blog, especially during the active part of my treatment. I simply wasn’t ready then. I needed more time and distance from my cancer diagnosis before writing was on the table. That’s okay. And while a butterfly is a symbol for thyroid cancer and diseases, it is also symbolic for this blog.
A beautiful butterfly did not start out that way. Oh no, there was a challenge to be faced. Quite possibly in the dark, and I’m sure alone. The once caterpillar had to struggle breaking free from the cocoon just for the strength to fly, something butterflies seem to do effortlessly. There were no short cuts here. Difficulties were not only inevitable, but necessary for the next chapter. While we all love to admire the beautiful and finished process of the metamorphosis, we tend to forget what it took to reach this completion.
I wear a thyroid cancer awareness bracelet that boldly states “No One Fights Alone!”. That is mostly true. Almost all of us have support from friends and family. If not that, there could be hospital, online, or advocacy support. Here is the thing though: You can have all the support in the world going through cancer, but there are still times you are required to be completely alone. From anything like a simple scan or test, to treatments that require isolation, you were probably by yourself at some point. Additionally, there may have been things you never vocalized and kept close to your heart. Your deepest worries. Not expressing your pain, whether physical/emotional/spiritual, in fear of being an “inconvenience”. Questions about the future. And of course, the tears you may have cried in secret. I wouldn’t dare compare something so precious as your burdened heart to a cliché. I just want to acknowledge this part of your life’s journey, cancer or not. It is so easy to rejoice and pull out the camera when seeing a butterfly. Same with ringing of the bells at end of treatments and cancer free parties. I want you to know that when I view both a beautiful butterfly and a beautiful you, that I will also acknowledge the struggle it took (and still taking) for you to get there.
I also identify the butterfly narrative in my cancer story because I am not the same person I was before I was diagnosed. I feel like my pre-cancer self was almost an entirely different person. While there are certainly many positives from this, I would be lying if I said I didn’t miss myself before the diagnosis at times. I know that doesn’t make a great sound bite for the inspirational clip on the news, but I mean it. Cancer is messy, and your life is permanently changed. There are worries you knew existed in the world that suddenly become personal. Yeah, they don’t go away when treatment is over. Meet fear of relapse, long term side effects, current side effects, emotional distress, and don’t even get me started right now on other concerns fellow young adult patients have to endure.
Nobody wants to come cancer land, but here we are. And I’m finally talking about it. Here’s to the next chapter…
My Broken Butterfly 