Welcome to our debut of Alexa loves AYA’s! What on earth is going on? Great question!
Do you remember song dedication radio programs? I love listening to them. Yes, they are still around! I’m always curious why people connect with certain songs and enjoy hearing the stories they share. But, there is just one thing…have you ever secretly wished you would hear a familiar voice call in and dedicate a song for you? I know I have! Guess what?
THE WAIT IS OVER!
If you are part of the adolescent/young adult (known as AYA, ages 15-39) family current or former, either by cancer or chronic illness, I will be dedicating a song just for YOU! I will also add in a few words to hopefully provide some encouragement. I am going to be dedicating songs you might not normally hear in this context, so plan to be surprised!
Ideally, I wish we could have at least a whole hour together. I would love for you to call in with your thoughts, questions, stories, tests results, and song dedications of your own. While I am not the Delilah of the community, I realized I have a blog and can start here. It is so important to me that you know you are valued. I care about you deeply.
Lets get to it guys! Our first song making it’s debut on our program (yes, it’s okay to giggle) is Super Cool by Beck featuring Robyn and The Lonely Island. This was on the credits for The LEGO Movie 2: The Second Part. I went to see it with my brother earlier this year and we both enjoyed the song. I have provided the adorable lyric video they created so you can enjoy the song and have something fun to watch!
I want you to know that…
YOU ARE UNBELIEVABLE
YOU ARE SUPER COOL
YOU ARE OUTRAGEOUS
YOU ARE AMAZING
YOU ARE PHENOMENAL
YOU ARE FANTASTIC
YOU ARE SO INCREDIBLE
This lyric is about you. I know people don’t understand what you go through on a daily basis and unfortunately they probably never will. But I see you! I’m so proud of you for keeping on even when it was and is SO HARD. Like that time you were up all night with scanxiety. Or when you didn’t want to do your treatments due to the side effects. You don’t have to be an inspiration to me or anybody else, that’s not the point. We both understand you had no choice. While unfortunately you may continue to face challenges, you are everything said in this song and more! You are certainly SUPER COOL right now, even during the times when you feel like you aren’t. We all have those days!
Thanks for tuning in to this edition of the new 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 until we meet 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.
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 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!
Every cancer patient has a moment in
their story where they knew something was off. Mine is a bit more
complicated. As stated in my “About” section: My butterfly
(thyroid) was already broken before cancer. I started thyroid hormone
replacement therapy when I was 16 due to Hashimoto’s thyroiditis
including a goiter (enlarged thyroid gland).
I was losing my hair. My skin looked like the Sahara Desert. My nails were brittle like glass. My face was droopy like the sad cat memes. And oh, the fatigue! No vitamin, supplement or caffeine amount would save me. Something was wrong. In an effort to find out what was causing my symptoms I visited several doctors. They said I had some sort of “anxiety issues” or puberty is rough for everybody so stop complaining about it. Or the big one: I was too young to have health problems. Just “relax” and all my issues would ~*magically*~ disappear. Did they learn these lines from med school? And if magic IS essential to my recovery, does that mean they attended Hogwarts School of Medicine? Your guess is as good as mine. I kept trying and found a doctor who ordered lab work for me.
I had 20 vials of blood taken. While that was a lot, it feels like even more when the much older phlebotomist is hitting on you the whole time. He got both my blood and on my nerves. Medical staff can’t claim ignorance of your age, that pesky wristband crushes any excuse. I wanted to run, but the needle in my arm kept me in that chair. I hoped Chris Hansen would pop out at any second and declare this was an episode of: To Catch a Predator. Unfortunately, Mr. Hansen never appeared. For the record, I did jump up as soon as my arm was bandaged and ran out afterwards. I also freaked out the receptionist. “What did they do to that poor girl, am I next??” were probably her thoughts. I apologize.
Since I finally got diagnosed with a thyroid problem, I was prescribed Armour thyroid for my replacement therapy. Armour is essentially dried pig thyroid in a pill. I used it for 3 or so years. For whatever reason that was making my levels worse and caused uncomfortable side effects. I had uncontrollable urges to roll around in mud and oink instead of talking. I knew the pain and embarrassment I was causing my family had to end. Just kidding, obviously. I started having issues with forgetting things and passing out randomly. I had some other problems, but I actually don’t remember them. Which proves the whole forgetfulness thing. My primary care doctor told me it was time to try Synthroid (levothyroxine), the most common and synthetic option. I didn’t want to because I saw so many horror stories and read that I would be making a terrible mistake. Not to mention it might appear that I was abandoning my holistic health philosophy. I was expecting a tar and feather treatment at my next visit to Whole Foods. Shockingly, none of those things happened. I started doing much better on “levo” and felt like I turned a corner at the time.
When I was 20, I was in an unfortunate (violent) situation. As a result of that, I had to visit my primary care doctor. He checked my neck again and told me something felt abnormal. He said he would order a neck ultrasound. Even though I was monitored with labs regularly, I never had an ultrasound before. Although it was awkward that my appointment was sandwiched between ultrasounds of babies, it was easy. Just lay there with some inconsistently warm goo on your neck. I didn’t think much of it really. I thought my neck was still swollen and that my doctor was just doing his due diligence. I received a phone call quickly after the radiology results came in. I had 3 nodules and they were large enough that they needed to be biopsied.
I was referred to a local endocrinologist and a biopsy was quickly scheduled. I was told it was going to be easy and that sometimes patients fall asleep. It wasn’t. I received no numbing medication on my neck and was expected not to swallow for an unrealistically long time. I know this now due to my second biopsy. It was nothing like my first one. Only 2 nodules were able to be biopsied. The samples were poor, and they were blamed on my skill as a patient. This statement still confuses me because I didn’t complete multiple years of schooling and residencies like the doctor did. But my skill gets blamed? Yeah, okay. This made me feel horrible, like a failure. I had been through more painful tests in the past. I pride myself on being a strong, red-haired lass. My morale was very low after the biopsy and it haunted me for years. It was something that “defeated” me. It was “stronger” than me.
If you are a patient or potential patient reading this before I write about my second biopsy, PLEASE KNOW: They aren’t all like this! Don’t worry, my second-opinion doctor looked at me like I came from the dark ages when I described this to her. If you have a good doctor, you should be in good hands. To the patient who has had this bad experience before PLEASE KNOW: Your biopsy excessively hurting, going bad, or not good samples. That is NOT YOUR FAULT! I have seen in other areas of the Internet where this story repeats. Please understand me clearly, it is not your fault. And it doesn’t mean your next biopsy will go that way, just like mine didn’t.
Answers were not coming from the biopsy. The pathologist understandably lacked enough cells to give any opinion on my nodules. The endocrinologist shrugged and said most nodules aren’t malignant (cancerous) so we could do follow-up ultrasounds. That was fine with me at the time, as long as I didn’t have to go through that again! I took my yearly ultrasounds seriously. My nodules kept growing, but I was prescribed higher doses of “levo” in hopes of shrinking them. I was concerned about the growth, but I was once again assured that most nodules were not malignant, and it could just be my Hashimoto’s. I tried to reassure myself. I was being a responsible patient after all.
After a few years of the monitoring, there became a point where deep inside myself, in my spirit, I knew something was wrong. I was having more fatigue than ever. My mind seemed like it stopped working. It felt like having the flu all the time. I wasn’t functioning well in daily life. Not only was my health failing, but I had this unshakable feeling. I blurted out months before what was my second-opinion appointment (even before it was scheduled) “I have cancer” to my confused family. No, I didn’t “speak this on myself”. It already was cancer. I just finally realized it. I knew it was time for a second opinion, including at a different hospital.
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…