appointments – Girl Meets Cancer

Treatment Updates and 2020

December 30, 2019December 30, 2019 ckosyla

Hi, everyone – it’s been a while!

I hope you’ve been enjoying the last days of December. I wanted to give you an update on where I’ve been and where I (think I) am going.

December 2019 Scan Results

In case you haven’t already heard (quick reminder: you can find me on instagram @girlmeetscancer, it’s where I’m spending most of my social media time these days), the results from my December MRI are back. My tumor is continuing to shrink! It’s down another 0.7 cm overall, which brings my total shrinkage since beginning doxil to 1.4 cm total. I celebrated with a Christmas themed selfie in front of my tree.

Treatment in 2020

After my infusion last week and meeting with my oncologist, we agreed to another three additional rounds and a scan. So I’ll have infusions number eleven and number twelve in 2020, followed by a scan. And then, it’s a big question mark.

The hard thing about desmoid tumors is that they are, in my oncologist’s words, “notoriously unpredictable.”

Treatment: My treatment options are – how to put this? – either dismally uncomfortable or not medically appropriate. There’s one other commonly used IV infusion, but it’s insanely aggressive and would treat me worse than doxil. I’m not a candidate for HIFU or cryoablation, which are high-tech surgical procedures, since my tumor is too large and too close to my brachial plexus. That leaves oral chemotherapy, of which there is one viable option remaining: pazopanib. Pazopanib is related to Sorafenib/Nexavar, the drug I was on for 9 months last year and gave me a whole host of issues: constant nausea, vomiting, emergency room trips, etc… only Pazopanib’s side effects are reportedly worse, which makes it very unappealing as well.

Here’s why pazopanib could be awesome: It could maintain the shrinkage that I spent a year to gain.
Here’s why it is scary: If all goes according to plan, I’ll be headed back to work once doxil is over… only I’ll be headed back then on a drug where I can expect nausea, vomiting, and more GI issues.

Active Surveillance: There is a chance that doxil switched my tumor into a pattern of stability/shrinkage that it had previously not seen, and that’s potentially a vote in favor of active surveillance (what is sometimes referred to as “wait and watch.”) Meaning, I’ll go off of all medication and get scanned after a specific amount of time to see if this thing is growing/shrinking/stable (which sounds like the name of a terrible reality show).

Here is why active surveillance could be awesome: Boy oh boy, do I miss my body. It’s vastly different than the body that I’m in now. My body, free of chemo, free of treatment side effects…. I can’t quite remember what it’s like to not have pain caused by treatment, or fatigue, or nausea, or some combination thereof every day. I’d love to see what this old girl can still do.
Here’s why it is scary: I could lose all of the shrinkage I fought so hard to achieve over the past year of doxil infusions. My tumor has never been stable without medication. The idea of this leap of faith terrifies me.

* If I were to go on active surveillance and my tumor were to grow, I would be eligible for a clinical trial that’s currently enrolling… but only if it grows 20%.
** If I enrolled in the trial, and I’m the control group that’s getting the placebo and my tumor continues to grow – I’d be switched to receive the drug… but only if it grows 20%.
*** I’m potentially looking at 40% overall growth before getting actual treatment.

As you can see, there’s a lot of different factors to consider. It’s hard not to look at everything and be overwhelmed, so I try to look at it one step at a time. Some days I do a pretty decent job at achieving this perspective and other days it’s a glorious mess. So it goes.

2019 in Review

I’m trying really hard not to fight this deeply engrained thought that I haven’t accomplished anything this year. I didn’t get to do… well, a lot of what I love. It’s hard to fight this notion that productivity is the only important measurable outcome of life, not just because I’m inapprorpiately Type A, but because people always ask how I’m “staying busy” while on disability, or how I’m “keeping my mind sharp.” The truth is, I’m resting 25 out of 30 days of the month. I’m watching The Golden Girls, napping, or working on a puzzle. (If that kind of productivity matters to you, I finished 6.5 seasons of The Golden Girls and finished 6 puzzles.)

At the end of the day, I stayed alive, and I try to tell myself that’s enough. And when that doesn’t work, I try to focus on numbers that help me feel proud, even if it’s just for withstanding.

$150,000 worth of chemo
$11,029 raised by the Unicorn Squad for the Desmoid Tumor Research Foundation
1,732 miles flown for CancerCon
900 miles traveled for infusions
210 miles traveled for a second opinion
76 members of the Unicorn Squad at the Running For Answers 5k
30 total researched social media posts for the Desmoid Tumor Awareness Month
10 infusions
7 prescriptions for chemo side effects
4 MRIs
2 surgical consultations
1.4 cm of shrinkage
1 tumor, measuring in at 4.9 cm by 10.9 cm by 8.2 cm.

In case you need a visual: this is a scale model of my tumor, made out of PlayDoh and decorated because that’s just how I roll.

This is not at all what I thought my life would look like at age 30. I’m still angry about it, to be honest. I still feel robbed of normalcy. To deny those facts would mean taking the humanity out of this experience and reducing the narrative to a neat, linear story. I’m not interested in either of those things. I’m here to tell the truth.

So here it is, the truth in all its messy complexity and unpolished thoughts: I don’t know what any of these pieces or numbers or treatment options mean. I’m grateful in some ways and very much aching in others. I feel simultaneously more connected to other patients than ever and also so lonely it hurts. At the end of the day, all I can hope is that the noise I made this year, whether advocacy, fundraising, or simply shouting my story loud enough so someone will hear, means that someone else will someday enjoy a greater sense of normalcy.

Thank you for reading. May we all experience health, peace, and joy in 2020.

appointments, experience, treatment

An ER Visit and a Chance Meeting

June 7, 2018June 7, 2018 ckosyla

700219991766ed45d89e9b559bb29246 — Fabulous rainbow image courtesy of pinterest.

I spent last night in the emergency room. On my list of things to do during the last week of school, this ranks far down towards the end, perhaps just above “give my kindergarteners espresso.”

First, some background. With my medication, I’m nearly always experiencing some form of nausea or loss of appetite. I’ll eat very little at a few meals, unable to choke down foods I previously loved; then I’ll be hungry a few meals later and try to eat as much as I can to take advantage of that window of opportunity. I have to eat even when I don’t feel like eating, which for anyone who has experienced it before, is a complicated issue. I’ve had people comment to me, “I’d love to have that problem!” or “It must be nice to feel like you can lose some weight.” These statements are really hard to hear. If I had my choice, I’d rather feel strong and healthy over sick and skinny, desmoid tumor or not. I suppose the “weight loss” impact might seem appealing, but without nutrition, my body doesn’t have the fuel it needs, which is exactly what happened this week.

At times my nausea is improved by eating (counterintuitive, I know) or at least subsides after a little food and a lot of rest. I spent Sunday laying low in my apartment: I did not feel great upon waking, but I managed to eat some oatmeal by the early afternoon, took a nap, finished a book, and felt better. On Monday, little appealed to me at lunch, but I made one of my go-to dinners: a falafel wrap with spinach, cucumber, tomato, and goddess dressing. I got to bed a bit early and decided I’d discuss the nausea with my oncologist the next day at my monthly appointment.

I never got to that appointment, because I was soon experiencing what I assumed as Stomach Virus Number Three of the past 30 days. I sent a text to my sister Jenna, who was scheduled to attend the appointment with me and is currently in nursing school. When it was clear that the virus was not letting up, she and my mom drove up to my apartment in the early hours of the morning. (I’ve said it before and I’ll say it again: my family is the greatest.) They took turns caring for me for the ten hours I was actively sick, looked after my super confused and anxious dog, and tried to catch some sleep ON THE FLOOR and on my couch. (Seriously, who does that? I can’t say enough how lucky I am.) When I was well enough to be in the car, they brought me to my parents’ house.

For two days, I had the ultimate recovery fake-out. I’d be fine during the day, eat a piece of toast and drink Gatorade, and send an email to my boss saying “should be good for tomorrow!”, only to end up sick that night. Finally, my oncologist’s office offered to get me a spot sometime the next day for an infusion of fluids and anti-nausea medication. They called in an oral anti-nausea medication and an anti-spasm prescription for my stomach cramping. But when I couldn’t even keep that down, my Mom went into “Mama Bear” mode and gently, yet insistently, offered to take me to the ER. We have an agreement: both of us always respect the other’s choices, but there will be times when we can straight up insist on having the final call. I knew I was in no place to make decisions about my care, so she googled which emergency room had the shortest wait, and off we went.

So, that’s how I ended up hooked up to an IV bag with fluids to hydrate me, anti-nausea to ease my belly, and morphine to take the edge off the pain. I finally felt some of the relief I deeply craved, and I remarked to my mom that it was the best choice I’d made in days.

Shortly before I was discharged, I would discover the full truth of that statement. One of the attending nurses on duty walked in and introduced herself. She had read about my medical history and said she had to meet me. Why? She herself had a desmoid tumor. I was floored and blinked twice to make sure this story wasn’t crafted by the morphine I’d been administered. As she worked on my discharge paperwork, she shared with me about her diagnosis, her surgery, and about her life five years later without a recurrence. Having only met one other Desmoid Tumor patient before (hi, Dakota!), this unscheduled and unorchestrated meeting was completely out of left field – and confirmed my belief that the ER was the best choice.

What’s next? Good question. I don’t really know. I’ve got another appointment with my doctor to discuss changing my medication. Since my white blood cell count was good on my latest labwork, it could be that these bouts are not actually stomach viruses, but a side effect of my medication. My oncologist advised me to stay off my medication until we can discuss it in more depth.

For now, I’m happy to be back on the couch with Fixer Upper reruns, water to drink, and slices of banana to snack on when I feel up to it. It’s been a wacky week, but as I’m continually reminded, living with this diagnosis means nothing that ever goes according to plan.

appointments

Making a Plan

February 24, 2018February 24, 2018 ckosyla

This past Thursday, I had a slew of doctor’s appointments to put together a plan for my treatment. It was a long, exhausting day with a lot of “tough to process” information, but at the end of the day, we were excited about our options.

I arrived at UPenn around 8:30 AM with my Mom, Dad, and brother as my entourage. I made sure to get a seat with a television view because HGTV was on and open-concept floor plans keep my blood pressure low.

Appointment 1: Radiation

My first appointment was with a Radiologist and Oncologist. He walked us through the typical course of radiation treatment: 15 – 30 minutes of targeted radiation, five days a week, for six to eight weeks. He explained there is data to suggest that radiation might not do anything to shrink my tumor, but that it’s often used in the event that it does respond positively. When he mentioned data, the doctor mentioned “50 or so case studies.” When my brother asked about when those were published, the doctor clarified: 50 case studies. Ever. (I’m not a unicorn for nothing, folks.) He said he would defer to my Medical Oncologist regarding timing: whether it would be before or after surgery, as there are pros and cons to both. (More on that later.)

Summary: I’ll very likely have radiation, either before or after my surgery.

Appointment 2: Oncology Surgery

My next appointment was brief, with a doctor who specializes in Oncology Surgery. He said he’s mostly there to consult with my Thoracic Surgeon in the operating room.

Summary: I’m quickly gathering men in my life.

Appointment 3: Thoracic Surgery

We took the Lucy Bus over to another Penn building, where I had previously dropped off biopsy slides from my previous surgery in September. My Thoracic Surgeon is the only doctor I met previously. (He’s the poor guy who had to tell me my lipoma-hematoma was actually more like a sarcoma, so hold on to your hats and let’s kick this into gear.) He’s an amazing doctor: he talks to me like I’m a human being and sometimes laughs at my jokes.

He explained that with a Desmoid Tumor, it’s hard to identify borders and be certain that a Tumor is gone. If I wanted to be sure I was cancer-free, forever and ever amen, he’d need to amputate my right arm and remove a good bit of my chest. Given my placement, it’s also tricky to know what exactly would have to be removed in surgery. (I informed him I would like to leave this planet with as many of my factory-issued parts as possible, please.) He had to walk me through all of the possibilities of what could be removed or disrupted: here is the list, rated from “Most Likely” to “Oh God No.”

Most Likely Going: Clavicle, top three ribs, pectoralis major, part of my latissimus dorsi (with or without skin attached)
Possibly Going: Pec Minor, Sternoclavicular joint, part of my lungs
Let’s Hope The Don’t Need To Touch, Remove, or Consider: Nerves under ribs, intercostal muscles, part of my thigh to offer a skin graft, staged chest reconstruction
Oh God No: Brachial plexus and the nerve which controls my voicebox

The last two was the toughest to hear. My tumor is right up next to my brachial plexus, the nerve highway which controls my right arm. If they need to touch that, I will lose sensation and function in my right arm. (I better start practicing holding a pencil with my left.) Worse yet, the nerve which controls my voicebox runs near my sternum. He thinks it’s far enough away from the surgical site but can’t be sure. For someone who has already lost her active yoga arm balance and handstand practice, to have my other love of singing taken away as well would be devastating.

While surgery is inevitable, the thoracic surgeon shared that he would defer to the medical oncologist, in the event we could try other things first to make the surgery less invasive. I was given a tentative surgical date of March 15, which could be canceled if another option was tried first.

I tried to imagine all of the things I wanted to do before being stuck in a bed, recovering for months. I have this fear of watching the seasons change from a hospital bed, and it looked like that could very realistically be happening.

Summary: Holy cannoli. This thing’s getting real.

Appointment 4: Plastic and Reconstructive Surgery

My plastic surgeon was great. He explained that any time there is a space created by mass removal, it needs to be filled with something so the body doesn’t invite infection, fluid collection, etc. (Lovely!) Since we don’t know what will go during surgery, we don’t really know what will need to be reconstructed.

I was given all the possibilities. Likely, my latisismus dorsi will be swung from my back to my chest wall. They might bring skin with it, too, to cover lost area, and if that’s the case it will be a staged reconstruction so I’m not under anesthesia for more than 10 hours. That means scarring and recovery not only on my chest but my back. I told him function was my priority over aesthetics: I’d rather be able to dress myself than worry about how “pretty” I looked.

Summary: I’m hoping I don’t leave the hospital looking like Sally from The Nightmare Before Christmas… but I’m cool with that so long as I can dress myself.

Appointment 5: Medical Oncology

We got in an Uber to the final appointment of the day. I was not in a great mood, having just heard that I was going to become an extra in Repo!: The Genetic Opera. I knew that a lot hinged on this appointment and I was anxious to hear the Oncologist’s recommendation.

He started by explaining that Desmoid Tumors are hard to predict. Some grow, some stay the same for a while, and a few even disappear on their own. He said that given my state of overall health and that I still have feeling and sensation in my arm, he wanted to try an oral drug first called Sorafenib. (Some websites consider it a chemo drug, but he did not.) The side effects are fatigue, my palms and soles might get hot, digestion issues, and high blood pressure. If I could handle those, they would meet with me monthly and scan me at the end of three months. If the scans show the tumor stayed the same size or shrunk, I can take another three-month course.

Let’s back this up here: I get three months of my life back, business as usual, but I might be tired and need to dunk my hands in ice water? I can finish the school year, direct the fourth-grade musical, and go to Florida for some sunshine over Spring Break? SIGN ME UP! I had kept it together most of the day, but I heard my voice shake when I told him: This is amazing news. I have 100 girls I get to go teach.

Summary: This crazy expensive drug will make me sleepy, but could give me my life back for the next three months.

What’s Next

I’ll start taking the Sorafenib once it arrives via an in-person drop-off. I’ll visit the oncologist a few weeks after I begin taking it. In the meantime, I’ve got a show to open, another to direct, and lots of gratitude to express. This is not the end of my adventure – quite the opposite. But I’ve been given time, the gift that everyone with cancer hopes for. Better yet, I can more or less maintain my current quality of life.

As I snuggled into bed on Thursday night, I watched some Netflix with my dog curled up on my lap. I was tired, relieved, and grateful. I could not ask for more.