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.

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!