Alexa Loves AYA’s: Everything Is Alright

Hello again my dear friend! I wasn’t sure exactly sure what our song selection would be, but I noticed a pattern.

Many of you had a difficult week.

From pain flares, financial issues, medication side effects, family/friend drama, a bad scan, loss of a pet (including myself), problems with work, fatigue, poor sleep, anxiety, depression, goodness gracious it’s been rough!

I remembered this song from the mid-2000’s and felt it was a good fit. Our song dedication tonight is Everything Is Alright by Motion City Soundtrack.

If you listen to the song, you hear about a person who is going through a lot and struggling. But you also see the self-convincing pep talks and reassuring that “everything is fine!” to others.

It’s okay if everything isn’t quite fine.

It’s important to me that you know I saw all your struggles this week , regardless of what they were. They are valid. You don’t need to tell me (or anyone else) that is everything’s fine. There are many days in our lives. Good ones, bad ones, and even the long boring ones. As this week comes to a close, I am hoping for a week filled with good ones for us all. I want to leave you with this thought:

Be gentle with yourself, you are doing the best you can.

I love you, remember that.

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.

Alexa Loves AYA’s: Like We Belong

Hey dear friend, I’m back! I’m sure you heard I was at the first ever Global Virtual Cancer Conference last Saturday. I had so much fun watching the conference at home and later being on the panel of a session called “So, You’ve Got The Good Cancer?” We talked all about the myths struggles of having a so called “good cancer” with plenty of jokes and laughs.

Missed GVCC 19? You can still attend! All sessions, booths, and clinical trial fairs will be online for 60 days after the conference. Go to gvcc19.com ! To view my session go to “Auditorium”, click the auditorium screen, click the “Live” tab, scroll down until you find our session (you will see the title, my picture and name) and click “Play” at the right hand corner.

With that in mind, I have chosen Like We Belong by Gawvi as our song dedication tonight!

Do you truly believe that your experience matters? Are you more intimidated to share your story next to more “famous” people in our community?

I want to shout something from the rooftops!

Celebrity has no room in advocacy or our community.

Don’t get mistaken, I am not referring to humble successful advocates or highly visible people who serve, they help so much! Not to mention they would tell you the exact same thing, they started off small too, after all. I love many of these folks. “Celebrity” is something else entirely, and you can usually tell. They don’t want to engage, they just want followers. They want perks, not work. Celebrity has ego, and they don’t want competition. They have friends (who are more like fans) that may even attack up-and-comers because they like the benefits they receive by association. Some groups might even be unwelcoming, forgetting that they were once outcasts before they found their friends.

Ignore these people, it’s just noise. I want to assure you that there is not only more than enough room for you, but we need you. We need your experience. Common cancer? So what! You had your own path. Rare disease? Absolutely!

Everyone’s experience matters, and that doesn’t come with an asterisk. That means EVERYONE’S!

We belong here, we belong TOGETHER!

You belong here. And if someone tells you otherwise, tell them Alexa has your back.

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.

Alexa Loves AYA’s: She’s Not Just A Pretty Face

You already know what time of the week it is. That’s right, It’s Alexa Loves AYA’s time!

As September comes to a close and we welcome October in, I have a few thoughts to share with you. September is an awareness month to so many important cancers! Childhood Cancer, Leukemia/Lymphoma, Gynecological Cancer (Cervical, Vaginal, Uterine/Endometrial, and Vulvar cancer), Ovarian Cancer, Prostate Cancer, and of course Thyroid Cancer.

ALL OF THESE MATTER! I’ve been so disappointed to see several retailers (large and small) jumping the gun on Breast Cancer awareness month (which is in October, of course) to make a profit without actually making a difference. I was contacted by several on Instagram trying to sell me things even though my bio states I deal with thyroid cancer. So obviously, it inspired me for our song tonight. I am dedicating She’s Not Just A Pretty Face by Shania Twain to you (if it’s your awareness month or not!).

Are you any of the things listed in this song? If not, it still applies to you! If you deal with any type of cancer or chronic health condition, you already know your advocacy isn’t only for one month or day. It’s every single day. And it’s not just with social media posts, clothing/accessories, or media. It’s at the doctor’s office standing up for yourself or educating a friend.

I love to remind you that you aren’t your diagnosis, but here is another reminder. Your condition is not your ribbon, color, or mascot. It’s your daily realities. Cancer or a chronic illness is not glamorous, cute, (that doesn’t mean you aren’t glamorous or cute!) or even palatable. It’s downright ugly. Don’t be afraid to be honest about that!

Ladies of all cancer types and ages, you are more than just a pretty face. You are not a commodity to profit off of. You make tangible changes in our world. I’m celebrating you tonight!

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.

Alexa Loves AYA’s: Tacky

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.

Alexa Loves AYA’s: Joy Rides

Welcome back to Alexa Loves AYA’s! You may have noticed my absence the last two weeks. I shared on social media that I had a gut punching loss in my life who was also a fellow member of the AYA community. I needed some time to pull myself together. I would like to thank you so much for all your support and love you’ve given me during this difficult time. I have a special edition of ALAYA’s in memory of him that I will post when I’m ready. Until then, here is what I’ve picked out tonight.

I have loved this band since I saw the amazing music video for their song Typical. I listen to them almost daily due to their unique sound. This song is also deeply personal to me as I will explain later on. The song I want to dedicate to you today, dear friend, is Joy Rides by MuteMath.

I know, I know. This could be a confusing song choice for you! From lines “It all went wrong today” and “the good news is probably worse” why oh why did you pick this song Alexa?? I was listening to Joy Rides when I filled out the new patient paperwork at MD Anderson Cancer Cancer. Getting diagnosed with cancer was difficult and I needed to embrace that instead of “fixing” it right away. But at the same time I still had reason to be hopeful, even if it wasn’t that day. Life IS messy. That is why I like this song. It isn’t all happy or all sad. It’s an acknowledgement of the sad night, but hope for the coming joyful morning.

I don’t know about you, but I’ve been going through what feels like a long night. I started questioning if morning was actually coming. Since the loss I’ve been on the quiet side (not like myself), not wanting to laugh or have too much fun. And it’s my cancer awareness month! I’ve been frustrated at my lack of “productivity”. A wonderful quote I heard is that grief is confusing, and it is! Grief isn’t just exclusive to the loss of a person, but maybe a body part, fertility, ability, or any other loss that comes with cancer or a serious/chronic illness. I hope you know it’s okay to grieve and let yourself take the time you need, even if means slowing down during an “important” time. It’s also okay to get help when it gets too overwhelming.

The song reminds us that “morning’s gonna come”. You may not be in your morning yet, and still in “it all went wrong today” phase. Until morning comes, whatever that looks like for the both of us, I will be there hoping. May our joy rides come sooner than later!

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.

Houston, I Love You (Thank You)

I compare my cancer adventure to the aftermath of a natural disaster, because you’ll never be exactly the same and rebuilding is required. But it’s also because I dealt with an actual one during it. Hurricane Harvey is part of my story, not only as a Texan, but as a patient of MD Anderson Cancer Center in Houston.

I didn’t have a typical thyroid cancer treatment timeline. My thyroidectomy was on May 10, 2017. Usually one would go on the low iodine diet shortly afterwards to start the Thyrogen injections and radioactive scan. That wasn’t the case because my oncologist Dr. Jeena Varghese, was out of the country in June. But she assured me it would be okay to wait and we would do tumor marker labs when she came back just to be sure. She was right, I was fine and I actually enjoyed the extra time to recover from my surgery.

I had another hiccup. I visited my local oncology clinic to get my port flushed and got some unwanted news. After two nurses and several access attempts, they gently let me know that my port probably needed to come out. I was slightly prepared because my port WAS 6 years old, but still flushing okay up until then. (To be clear: I had a port for another condition, not for thyroid cancer. You can read more in my “About” section.)

After clearing it with both my oncologist and reconstructive surgeon (Dr. David Adelman), I was able to get my port removed at MD Anderson on August 9th. It was agreed upon that I would recover and then come back to start the LID and Thyrogen injections. We declared September as THE month, finally!

Then August 25, 2017 happened.

I watched a city I loved and that quickly became my part-time home get drowned. I felt helpless watching the merciless Harvey hit Houston while I was dealing with the heavy rain we had from the hurricane in East Texas. I was glued to the news and weather for any updates. Then I saw the pictures. MD Anderson was really good about posting photos and updates. Images of the flooding weren’t a human interest piece on the news, it was personal. I saw a picture of the actual street I look at outside my room at Rotary House under water. I saw some of my hospital hangouts flooded. I watched live footage on TV from the neighborhoods I love destroyed.

I understood that there were still patients at the hospital. I wondered if they would be okay and taken care of. And of course, the incredible people at MD Anderson rose to the challenge. They hunkered down and rode it out selflessly to take care of these vulnerable patients. I’m sure it was comforting to them to see the employees be so committed to helping them, even after a disaster like Harvey.

I’m sure you figured out what happened. My appointments got rescheduled, again. October this time. But I was okay with that. Now I wasn’t the only person that year who had a deviated treatment time, other patients had to reschedule too.

But here comes a plot twist! A stitch became abscessed in my incision and started oozing three weeks after Harvey. I had no choice but to return to MD Anderson for a stitch removal. Since I am committed to being honest, I need to share this. I was terrified. I felt like I would be intruding during the worst possible time. Yes, I knew I had to return eventually, but not this soon! I wanted to give Houston plenty of space to recover and so I hated that I “needed” to go back. Plus, how on earth could I expect MD Anderson to take care of me when they needed help? It felt like too much to ask.

My brother helped me get ready that morning and I cried and cried. He reassured me that MD Anderson is the best in the world and he was sure it would be fine. I cried my entire way to Houston because I was so nervous. I cried my make up off. In what can only be described as bewildering, I bawled my eyes out at the Buc-ee’s parking lot in Madisonville. And that was with the typical Buc-ee’s goodies. This is how messed up I was. I brought my stuffed sheep Selah and kept her near me like I did for my two previous surgeries. The closer I got to Harris County I probably cried more. My anxiety about the trip started to skyrocket.

When we ventured closer to the Texas Medical Center, the devastation was unmistakable. Trash was everywhere. Homes were destroyed. Water damage was visible. The thing that stuck out the most is how the trees lost the typical Houston color I knew. The grass was pale. Reminders of Harvey were everywhere, especially with signs declaring support of Houston. My heart was shattered because I passed by these homes several times. I had seen the residents mow lawns or hang out on the porch. I’ve waved at a few of them, too. The reality was not lost on me that actual people were affected.

I remember pulling into the Mays Clinic parking garage. I took the passenger seat mirror down to wipe off my mascara run raccoon eyes. My mom said “Let’s do this Alexa!” in the supportive tone I’ve heard before when I didn’t want to do something. I went in the elevators sheepishly. When I walked in the clinic I was greeted by the friendly and kind University of Texas security we all know. Since I was early for my appointment, we stopped by the Waterfall Cafe to eat lunch. I saw the same employees I had seen the last several months and they served me like it was any other day.

I finally made it up to the Julie Kyle Center for Reconstructive Surgery to see Dr. Adelman and his staff. I was hurting from the stitch abscess and was nervous about the stitch removal so I started crying again. I was also scared because I didn’t know what the staff was going through.

I was called back and it was like any other visit. Dr. Adelman fixed me right up and the staff sent me on my way. My next stop was going to the hotel, since the Rotary House was booked up I had to stay in another hotel. I stayed there before and I was worried that it would be different. Check in was the same. An issue came up with my room and a staff member had to come up. Of course we discussed Harvey. He explained that most of the hotel with booked up with families who had lost their homes and the rebuilding process would take a while. But he also was confident Houston would pull through.

October comes around and while Houston was slightly more recovered then, it was still struggling. I’m finally, for real this time, at MD Anderson for my Thyrogen injections and radioactive scan. That is for another blog post, but I want to share this story with you.

On my second day of shots at the Main Building Ambulatory Treatment Center my nurse was Charlene. I was required to be still for 30 minutes after injection with clear vitals before I could leave. I’m a pretty low fuss person. If you try to do extra things for me, I’ll probably say I’m okay. Don’t worry about it! Especially if it’s just 30 minutes. My nurse the day before was like fine, you do you.

Charlene wasn’t having any of that. She probably recognized my type immediately and knew how to deal with it. She ordered me around and served notice that I WAS getting comfortable and it was just Too. Freaking. Bad. if I didn’t want to. Like any good Texas gal, I said Yes Ma’am. However, I was NOT laying in the bed like she wanted. I have to keep some stubborn street cred here. She let me win that one, but on her terms. She gave me my injection and made a Transformers like pillow contraption with the chemo recliner. I settled in and she gave me a heated blanket and positioned my body for maximum relaxation.

“Good, now I feel better!” she said with a satisfied smile knowing she came out victorious. And I’ll admit it, I WAS comfortable. The Thyrogen injections made me so sick and that gave me some time to relax. Please know, I’m not upset or blaming her. She knew this was the only way to get me chill out and I’m really thankful that I met my match. Charlene chatted some to take my mind off the injection site pain. She asked lots of questions about me and really was invested. Then I asked her about Harvey. She paused and had a still, reflective look on her face.

“Yeah, we’re all still struggling from Harvey. In fact, it’s probably going to take years to recover. Some of us are still living in hotels. It’s really not a good situation.” she said in a palpably somber tone.

When she left because her other patient had arrived, I sat in my comfortably modified chemo chair reflecting on that statement. This was one of those moments you never forget. I realized something…

To UT Security, you always made me feel safe even if your future felt insecure.

To the Shuttle Drivers, you always got me where I needed to go even if your car may have been damaged.

To the numerous Cooks and Food Service staff, you always fed me even if you were limited to a hotel kitchenette.

To the Nurses, Lab Techs, and Medical Assistants, you made me feel comfortable when you may have needed comfort yourself.

To the Chaplains, you provided me with faith when you may have been questioning yours after the devastation.

To the Doctors, Nurse PRACTITIONERS, and PHYSICIAN ASSISTANTS, you took care of me even if you needed someone to take care of you.

To the Receptionists and Help Desk, you provided me answers even if you didn’t have any for yourself.

To Social Work, you were getting other people resources when you may have needed access to resources yourself.

To the Volunteers, you continued to be there at the hospitality center even if you didn’t have a place to go. (A special thanks to the volunteer who played harp music when I needed it)

To Housekeeping, you made sure things were clean and sanitized for me and other patients even if you lost your own possessions.

MD Anderson is consistently ranked number one for one reason. It’s not the name or location. It’s the employees that work there. From top to bottom the people of MD Anderson are the best around. It’s one thing if the just doctors are fantastic, but it’s another if all the employees are too. I speak so highly of the facility because of this and other experiences. When Harvey hit, they went above and beyond of answering the call.

If you were an employee of MD Anderson during this time, if our paths personally touched or not, I want to say thank you. I would never be able to express my gratefulness in words, but I will say this:

Go raibh maith agat

In Gaelige (Irish) this is how we say thank you, but translated literally it means may you have goodness. I hope the goodness you brought to me returns many times over.

During my October visit I stayed in a Harvey damaged hotel and because of that you could only stay on the top floors. I remember laying in the bed watching the 2017 World Series with the Houston Astros playing in Los Angeles. I actually left Houston when the team was driving in from the airport for games 3-5. I watched game 7 at my house when they won. I believe it was Dallas Keuchel who said that the win was for all of Houston. I gleefully told my mom that it included us, too. In some weird way, I am thankful for all those delays. I experienced two things now interwoven with Houston’s history, although I wish one of them never happened.

Here we are in 2019. I’m sure Houston isn’t fully rebuilt yet. That’s comforting to know, since I’m still not rebuilt from my own hurricane. But watching Houston recover encourages me every time I visit my beloved part-time home. The color came back to the trees. My “neighbors” went back to sitting on the porch. The businesses became busy again. Houston makes me believe in me. MD Anderson makes me believe in me as well.

I love you Houston. I love you people of MD Anderson. Thank you for everything you have given me. I promise that I will carry you with me as I continue to rebuild my own life post Hurricane Cancer. Love, Alexa.

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.