Alexa Loves AYA’s: On The Inside

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.

Alexa Loves AYA’s: The Middle

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.

Alexa Loves AYA’s: True Colors

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.

My Thyroid Biopsy (A Guide)

In this post I am going to share my biopsy story and walk you through the process. I’m including tips and answering some questions you might have.

  • What: Thyroid nodule biopsy. This is called a FNA or Fine Needle Aspiration biopsy.
  • Why: To see if nodule(s) are malignant (cancer).
  • Where: Baylor Clinic, Baylor College of Medicine in Houston, Texas.
  • Who: Performed by Interventional Radiology.
  • When: March 20th 2017.
  • My variables that should be considered when reading this: My nodules were in the back of the thyroid, not in the front which makes for a more complicated biopsy. I also had 2 biopsies on each side of the thyroid which created more swelling instead of a single biopsy.

warning! IF YOU ARE READING THIS BEFORE A THYROID BIOPSY ASK IF LIDOCAINE WILL BE USED BEFORE SCHEDULING or going. IF THEY SAY NO, RUN!!! refuse any biopsy without lidocaine injection.

They should have discussed blood thinners prior to your biopsy. I am not a doctor, but I wanted to let you know to double check if they forget or you aren’t sure. I was asked to have a light breakfast, so I chose to have a bowl of oatmeal at the hotel. I feel like this was the right decision. I wouldn’t recommend anything spicy or even all that solid. You might want to pass on meat too. Yogurt or a protein shake might be a good option. Be sure to get some water in before!

I arrived at imaging, did the usual check in. An ultrasound tech came to get me. They do not allow anyone else to go with you because of sterilization. She took me to a different room from where I had my previous ultrasound done. This was more like a doctor’s office room with a counter, sink, and supply cabinets. The bed was different too, once again like you’d see in a doctor’s office with tools to raise or lower it. There was an ultrasound machine and tools on a steel table. It looked like what dentists have for their tools.

We had a discussion about the potential risks and what to expect for recovery. I don’t remember everything that was discussed, but you don’t have to worry about this part too much. Just answer the questions they ask and ask your own if you have any! They want to make sure you are safe and understand what will happen. Finally, I had to sign a consent form. These things are always scary since they list the worst of the worst outcomes. But the tech assured me again that this is very safe.

We also discussed my previous biopsy and she assured me this one would go better. Just like the endocrinologist did. They should also double check your allergies. Since I’m allergic to latex, they triple checked to make sure everything in the room was latex free. She told me this was the best doctor at Baylor and she would let him biopsy any of her daughters. That made me feel better.

I was asked to change into a medical gown. My memory fails me if I had to put on a cap, but you may or may not depending on your clinic. The ultrasound tech came in to prep. They will explain how they want you to be positioned. You will likely have a pillow placed under your neck to expose the area more. It’s possible you already had the pillow technique done on an ultrasound before, it’s not different.

The IR doctor came in and introduced himself. A lab tech person joined him and he introduced her. She would be processing the cells and putting them on slides for the pathologist. This would be a total of 3 people in the room, excluding me. She spent all her time at the counter/sink in the other part of the room so I didn’t see her much though. He looked at the ultrasound machine first to see where nodules were, so he could inject my neck with lidocaine in the right places. He informed me that he was just going to biopsy the 2 larger ones. My neck was sterilized (similar to a surgery) at some point and the surgical stuff came out. Gloves, masks, and drapes round my neck.

So to recap the steps at this point: 1. Q&A from tech plus signing consent forms. 2. Changed into a gown (with or without cap) with basic prep from ultrasound tech. 3. Doctor and lab tech come in. 4. Doctor does his own ultrasound of my neck to plan the biopsy out. 5. Final prep is done for show time.

The doctor prepared the lidocaine injections. I was told that while this will numb most of the pain, I might feel some pain in the thyroid area since they can’t numb that. When the final location was determined he injected them into my neck in different (but strategic) places. While this part is absolutely sucky and painful, this is the better alternative. If you’ve had a local injection before, its the typical lidocaine burn and sting. We waited a few minutes for them to “kick in” and he got the biopsy needles ready.

I really recommend that you don’t look at the tools too much. They look scarier than what they should. There is an attachment they add to the needle/syringe which I assume makes it easier for the doctor performing it? It almost looks like a large gun trigger or what a basic 3D printed glue gun might look like. It makes the whole thing look huge when in reality the actual equipment is about the size of what you get for lab work. Yes, I shared this because you will see them one way or another. But know the contraptions are added to what you are actually getting and it isn’t that large.

It was time for the needle to be inserted. You are requested to be VERY still with no sudden movements. Depending on where they biopsy, you could be asked to tilt your head. That usually consists of look right, left, up, etc. It wasn’t too bad once the needle was inserted. I felt pressure around the skin area and some discomfort in the thyroid. A way to describe the thyroid discomfort is like taking your nail and scratching, but not breaking the skin.

Here is what you need to know: They don’t just put the needle in the nodule, pull the syringe, take out the needle, and you’re done. The doctor “bobs” the needle. They move it up and down while still inserted. While it does look like it, it’s not quite a repeated stabbing. This sensation feels odd for sure. Picture your nodule being a trampoline and the needle has to bounce on (more like inside) it to get your cells. This is probably the best way I can describe it. You will not have one trampoline session either. Trampolines are fun after all, you can’t go just once! Every time the needle goes in it’s called a pass. You will have multiple passes per nodule on different locations. This is to get an accurate picture of the cells within the nodule.

I got breaks between each pass due to placing the collected cells on a slide. I could ask for additional time if I needed it. MAJOR TIP: Try to keep your breathing stable and slow. If it helps, close your eyes. Try some guided visualization techniques prior to your biopsy and use them. I won’t claim like other people that it will completely take away all the anxiety, but it will help. Prayer is another option. Think about past memories, no funny ones though. Keep busy mentally. Plan a party, craft project, or even mentally redesign part of your house! Your biopsy will go much better if you have something to do in your mind away from the procedure. I’m a fidgety type person so it makes me nervous to be completely still. That gets amplified to 1000 when a needle is in your neck and you Absolutely. Shouldn’t. Move. Thinking about anything else helped.

We reached the part where both nodules were biopsied and it was time for a pathologist to review the slides. If the pathologist thought they were sufficient, I was free to go. If not, I would need additional passes. Everybody left the room at that point, so I was by myself. They lowered the lights so I could rest. The ultrasound tech went to the waiting room to update my mom on what happened until that point and what would be happening next. It felt like a long time, but it was probably 20-30 minutes.

The doctor came back in and said I would need a few more passes. I was able to get a little more lidocaine, but there is a limit to how much you can get in a period of time so I wasn’t as numbed up like I was earlier. While these passes were significantly more uncomfortable, they were tolerable. At no time did I feel like I couldn’t handle the pain/discomfort. After the additional passes, the doctor informed me we hit our limit for each nodule and I was done. I received an ice pack to immediately place over my neck and several others since I had a long car ride home. They told me I did a great job. I walked out to the waiting room feeling amazing. I conquered something that had haunted me for years. No longer did a biopsy have any power over me.

Let me stop here and answer a few questions:

  • Can I drive myself? If you are 1. About 30 minutes or under from home and 2. A low traffic area, you probably can. An hour is iffy. Any more than that is an absolute NO. If you want to be on the safe side have somebody else drive you home.
  • Can I go back to work the same day? I’ll be honest, no. I don’t recommend this. And if you want to attempt at that, don’t bank on staying the whole day. Your swelling will likely increase as the day goes on. Your neck will start to get sore. You could have issues with your voice, I did! Ideally you need to rest and ice your neck.
  • Okay, so when do you think I can return to work? I think a good litmus test is when you can speak without pain or if you can hold your neck up comfortably. If you have one nodule that was biopsied, would say depending on your job, perhaps the next day. If your situation was like mine, you probably need at least 2 days off. I really can’t say for sure, it is dependent on so many factors. My biggest advice is listen to your body. If you feel like you aren’t ready yet, don’t push yourself.
  • Can I be alone or should I have a family member with me? Sure to either one. Whatever makes you most comfortable. While this isn’t a surgery, if having somebody around helps your recovery or that would make you feel better, go for it! If you do better alone with just you and Netflix, that’s cool too. My advice with that in mind is to already have soft snacks like applesauce, gelatin (the usual or vegetable based), smoothies/veggie juices, or pudding ready when you get home. Your neck might be too swollen to eat regular foods yet and I don’t recommenced going out shopping afterwards. Here is my exception to whatever floats your goat (that’s intentional): If you have small kids, YES get help or have grandparents kick in. I think that would be too much.
  • What do you recommend for ice packs? Something that has give. You are going to want something that gently lays over your neck. Hard ones will not work. Honestly, frozen peas might be perfect for this. I already had an ice pack in my freezer that was soft and pliable and it worked great. You will want more than one to rotate with.
  • Are there some other foods you recommend? Yes, besides what I mention above Sonic slushes are PERFECT. The ice consistency goes down easy and helps soothe the soreness. Icees work too, but Sonic CRUSHES this.

Let’s talk about recovery! I feel like this is an “expect the worst but hope for the best” situation. My recovery was longer than I anticipated. We’re family here so I will be completely honest. My biopsy was harder to recover from than my thyroidectomy in the throat area. The swelling was a real issue and I couldn’t eat solid foods for a while. To give you an idea from March 20th to my first appointment at MD Anderson on April 6th, I struggled. I was still bruised and sore to the touch, but thankfully not consistently sore. I’ll admit that my ultrasound at MD Anderson was definitely uncomfortable. Although I’m telling you about the difficulties, I’m confident you will make it through the hard parts! I would recommend expecting one full week of not being 100%. Don’t try to be Superwoman or Superman. Take it easy!

Here are two pictures of my bruising:

This was RIGHT after my biopsy when I got in the car. I drew a circle about a part of my neck that still had betadine solution on it.

Here is three days post biopsy. Note the yellow bruising.

I think recovery is so unique to the individual so I want to stress that you just have to take it day by day. I also want you to know that you need to take all the time you need and don’t be afraid to ask for help. Yes, this is “minor” but you still need to recover. If anybody gives you trouble about this just send them to me!

Do you want to hear a funny story? Of course you do! So anybody that knows me knows I am a HUGE My 600 lb fan. I love seeing people turn their lives around and I root for them. I actually coped with my trips to Houston by pretending I was going to see Dr. Nowzaradan. Remember this, it will tie into my thyroidectomy later. My poor mother due to the stress of what just happened AND Houston’s never ending construction made a wrong turn. That wrong turn was AMAZING!

While I was laying in the passenger seat tilted back I started noticing familiar buildings. I said no way. NO WAY. I told my mom to keep going.

GUYS. WE ENDED UP AT DR. NOW’S OFFICE BY ACCIDENT. IT WAS INCREDIBLE.

Yes, I should have rolled down the window but I didn’t want to seem like a Dr. Now stalker.

This was such a blessing to me and I took it as a sign of encouragement.

  • Final thoughts: You’ll get through this. It can be uncomfortable, but tolerable and I have faith that you will do great. Don’t be afraid to speak up if you need a break during the biopsy. Please go easy on yourself during recovery and go at your own pace. Don’t think you are “being a baby” or something like that. It is a sign of strength, not weakness, to ask for help. I believe in you and I’m sending you a virtual hug!

Alexa Loves AYA’s: Super Cool

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

WOOOOOO HOOOOOO!

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.

A Visit to the AYA Clinic at MD Anderson

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 Conference and 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!

Diagnosis: Impossible

Here is an actual picture of my arm after the lab incident!

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.

And that is when the story changed.