next steps?

As of today, it’s been a week since I’ve finished radiation therapy. I added another bell ringing to my melody of survivorship, connecting notes to bell ringings of past radiation treatments and chemotherapy treatments.

Now what do I have left from radiation?

The mask itself that smuggled in so closely to my face in now in my possession. I have seen past survivors take these masks and make some sort of art with it. I am not quite too sure I am that creative, or if I will ever attempt to make anything out of it, or will it just end up in the trash someday as a distant memory of those 10 days? It’s been at least useful to show to my family and friends to explain in more detail what it was like during radiation; now the mask is used as a presentation tool in a way.

Look at my neck, and you might see briefly the turtleneck of pinked and scaled skin from my radiation. I can even just feel its varying textures on my skin, the radiation-sun making my neck like the desert sand and moles like scattered rocks. Apply the aloe-lotion liberally and let it soak in and heal.

The most annoying and aggravating thing left from radiation is my throat, irritated and sore and burned from being in the line of radiation’s rays. Yes, as if indeed the radiation machine was the sun itself, powerfully burning cells in its ways, and yet at the same time, the radiation machine felt like it was my moon orbiting around me as a I laid on the table, machine-moon circling me, its planet. Or really, the cancer is its planet. I am just the body-atmosphere encompassing it.

But man, my throat is so sore, and when I explain it my mother asks if it’s like when you have a cold or strep throat. But its not like I’m coughing or my chest is hurting from doing too much of it so. And yet, I suck on Burt’s Bees honey cough drops every hour. I feel every swallow and its like my throat is covered in sandpaper (yes, indeed, my neck is now the desert-sand.) Must chew, overly chew food until I think it’s small enough to swallow and even then I still feel it.

So here is my diet recently:
breakfast: oatmeal
lunch: soup
dinner: more soup.

And add in lukewarm teas, lattes, yogurt, bananas. And slowly adding in more smoothies and Ensure-like drinks.

(Thank God I am already addicted to teas, lattes, and smoothies, ha!)

I know I am slowly healing, but I am also so impatient! Help me Jesus to be patient!

While everyone else was going Black Friday shopping, my parents, my boyfriend Josh and I were heading to Cincinnati Children’s Hospital. In the car we literally passed everyone at the mall, the shopping center, the stores, the lines to the stores and were in awe of how many people were so dedicated to gathering and purchasing stuff for the day.

I’ve been waiting to go to Cincinnati Children’s all month just like a kid waits for Christmas, but in my case I’m exactly one month early. My gifts though are not clothing and gadgets but gifts of clinical trials and chemo options.

Josh and I have never been on a mini road trip with my parents before. He’s pretty quiet, like always, and I pretty much hold his hand the entire way down there. He is amazingly patient and doesn’t seem to mind at all. I don’t have to say anything to him really about my thoughts, how I am semi-nervous, how I didn’t eat a whole lot this morning for breakfast, how I am a little anxious and yet excited to see somewhere new and meet new people. Somehow the various squeezes of my hands, our Morse-codes of hand squeezing and long pauses of hand holding, are enough for communication at the moment.

We arrive to Cincinnati in great time, and I am reminded about so many other trips to this city that I love. I love almost as much as I love Columbus, almost. Trips of Cara and I visiting our friend Maria (who I met during my 2nd relapse), to a mini getaway with Katie, Hope and Halley for the weekend, to napping on UC lawn with Sol and Hope, to Holtman’s Donut Shop trip with Marah and Lynn, to going to the Great American Ball Park with my family, to many, many trips to Jungle Jim’s with all sorts of friends (I cannot escape that tea aisle!)…I have so many, many incredible memories in this wonderful city of Cincy. They are layering like bricks to be the foundation of good memories here in Cincinnati, and this trip to the hospital I am hoping to be another brick and many more.

I am amazed at how modern and colorful that Cincinnati Children’s is, and I have only heard great things about this hospital, how it is one of the best in the nation. I don’t even know how that is possible when I can think about and see is my own hospital home back in Columbus at Nationwide Children’s, how they are the best to me, my literal second family of so many years.

After checking in, filling out typical paperwork, height, weight, temp, blood pressure, and the typical wait time of at least 30 minutes for the doctors to come in, one of the fellows arrive. His name is Alex. Seems young. Reminds me of how young Nick was when I first met him at Nationwide Children’s 12 years ago (gosh, 12!?)  Tall, short buzz cut, glasses, and an awesome red and green bow-tie with penguins on it. He is kind of quirky, maybe a little nervous. I mean, it does honestly feel like we are on a first date where our friends at Nationwide Children’s have decided that we would be good together, that we are good fit, and so therefore they set us up like good friends do. I know that both of us are looking at each other, asking each other questions to see if we are indeed a good match like our friends thought so.

After conversing, he leaves to go get the doctor, Dr. P, who arrives with a mask on because he has a slight cough and doesn’t want to get me sick. Dad jokes later that he should be like Woody Allen and use his eyebrows for gesturing so that we can better understand him through a mask that muffles his voice. (Oh how much I love watching any Woody Allen film with my dad and love even more to hear the full on laughter, the gasping-for-air-and-crying laughter that Woody jump starts in my dad). And yet, the doctor’s voice goes so quickly, reviewing not just the clinical trial that I was interested to be a part of, but goes on into detail about three other potential options. He is talking fairly fast, trailing here, going back to a different point there, and my mental notes are jumping all over the place. But he is thorough for sure!, and he is a medical doctor and researcher background so I don’t fault him. My English major mind has had to read and interpret poems and stream of consciousness thought that my analyzing mind is doing just that, analyzing and interpreting this medical-mind before me. And yet, at the same time I feel like I am at the car dealership with a salesman pitching to me all of latest cars and products, and yet this is chemotherapy and studies and my life, my health. I just have to remind myself throughout that he is a doctor, he is only trying to be thorough and help you and not “sell you” on one particular trial or another. Calm yourself.

He explains to me more in detail about the clinical trial that I am more interested in. It involves taking chemotherapy pills (yes, pills!) instead of IV, which I am very excited about. One of these chemotherapy pills I have seen before, Temozolomide, and a new pill, Talazoparib. (If you are science-y, you can read more about the clinical trial here.) He explains that I would be taking these pills for 5 days in a row for a week, and then have 3 weeks off from chemotherapy, and then a new cycle would begin. I would do this for 2 years. I also would have to go to Cincinnati Children’s once a month to pick up the medication as well as be checked out.

I start firing off questions, and I know I am probably being harsh and abrupt but something goes off in me when he says “This chemotherapy would be tolerable.”

TOLERABLE!? What the hell does that mean??

And how can you, a doctor, know what is “tolerable chemotherapy”???

I ask,
“Would I loose my hair?”
“Would I have low blood cell count?”
“How fatigued will I be?”

I want to just keep shooting him with questions as if now we are flipped. He was once seemingly the expert here, but I also am an expert here my friend in chemotherapies and how you feel when you’re on them. I want him to know this with every question about side effects that I ask, as if I am now the teacher and he is the pupil.

But he is pretty assuring for my brashness. Points for him; I know I can be sassy and I need someone like him who can handle that. And his response makes me appreciate him more, remind me of where I am, how he is genuinely trying to help me, and he is being so thorough and willing to pause for questions throughout our time.

I just want to do this trial, and I want to do it now. Ugh, I sometimes hate how slow the medical world works, how you have to check in on things, talk to this person, read this imaging…and yet it is good that these procedures help to slow me down and cause me to pause and think. The doctors too need to pause and discuss before moving forward on this trial. They are worried that I might have had too much radiation in the past on my pelvis, and must check in with OSU James to see if this is so. If that is the case, then I will not be able to be a part of this study because of the impact the medicine would have on my red blood cell count. The pelvis, along with other long bones in the body, help to create the red blood cells of the body, and a damaged pelvis would make this task harder on my body during this trial. So I am praying, praying that my past radiation does not interfere with this potential present treatment!

Dr. P also informs me that I could be a part of another study. I could send my a recent biopsy to be genome-sequenced and learn more in-depth about my particular cancer and its mutations. I’m fairly skeptical at first about this; I’ve heard about it and know that it is very expensive and time-consuming. I know that it would be amazing information to have, but I don’t want it to be a burden on my family either. And yet, the doctor assures me that even if insurance doesn’t cover it, the hospital will cover the bill for this procedure and that they have already for so many other patients. With this information, they can give me information on a more specialized, personalized treatment plan for me and my particular type of cancer, not just the general Ewing’s sarcoma but the Jenna-Barnett-relapsed-4-times-Ewing’s sarcoma. I agree to have it done. Why not if it doesn’t cost anything and would only be helpful information to have in whatever future there may be.

Ugh, this is a lot to take in for the 4 of us as we sit there. Mom, care and concern on her face. Dad, asking questions like he always does, always prepared, writing down information. Josh, the silent tape recorder mind that he has which makes him such a good listener. I wish I had honestly recorded it, and I thought about doing so previously before sitting in this hospital room. But these medical trial information and facts just came in like a rush when Dr. P entered, as if my family and I were calming rafting the waiting room waters and then all of a sudden hit so many rocks and waves of information.

I ask them two of them one more and final thing:

“Why are you in AYA [Adolescent/Young-Adult] oncology? What made you choose this?”

Because seriously, who chooses this field without really, deeply thinking and meditating over it?

I surprised them. No more medical speak here. This is the heart.

In more words or less, they both come back to this:

“We enjoy that we can combine the medical with relationship building.”

Relationship building. yes. These doctors want to know my family and I and not just my body and cancer, and I can deeply sense this after talking to them. I am more at ease now, I have a small spot of affection growing for them as well as gratitude for their time. It is because of the relationships I have at Nationwide Children’s Hospital—not just the medical care—that keeps my family and I going back to them. I trust Nick, Paula and Stacy and their team immensely because of the years of treatment, the numerous phone calls and texts, the willingness to have hard, compassionate and understanding conversations. They are the people I have grown up with (literally) and no one can and will take their place. And my inward heart secretly still fights at the idea of adding new medical members to my team, to my family.

Yes, this is a scary step of faith, going to Cincinnati, talking to these doctors, being here in this moment still not knowing what exactly are my next steps in treatment. It all keeps going back to the fact that this fourth round of relapse just feels different and I’m not too sure why.

Maybe Jesus will use this clinical trial to heal me, new chemotherapies that I have never seen before.

Maybe I will always be relapsing throughout my lifetime.

Maybe I will meet new AYA patients in Cincinnati and discover new resources for myself here.

I never know what He is doing, and yes, it is hard to patiently wait still as I am waiting to hear back from the doctors about past radiation and if I am accepted into this trial. And it is hard to ask him to help figure out how you even go about treatment decisions again.

But isn’t that all I can do right now is just pray and wait? It’s funny how really almost most things in life are built on that combination, praying and waiting?

Help me wait.
Help bring answers soon.


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