guidance

How Can I Help?

I’ve gotten so many wonderful offers of help from friends, family members, even strangers who have asked how to support me during this time. Your generosity is truly overwhelming!

I’ve put together a list of things that are very much helpful and some things to avoid.

* Important note: We will absolutely both make mistakes. This is my first time with this kind of long-term battle. I may be short-tempered or moody and you might be uncomfortable. It’s okay. We’ll both get through this!

PLEASE DO…

  1. … reach out!

A text saying “thinking of you!”, a story about your dog/cat/toddler, or a quick update on your life are all great things. I’ve gotten so many of these that I recently couldn’t keep up with responses! Do know that even if I don’t reply for hours, days (or ever), I will read it, smile, appreciate your gesture, and send you some love back.

  1. … keep thoughts/prayers/good vibes/positive energy coming!

I can use it! If you feel like you can’t do anything else, trust me, this is helpful.

  1. … stay tuned and read on!

There is so much that’s out of my hands right now, so I really want to control the narrative of my story. I want information to come from me and to dispel any speculation about the current state of my health.

At current press time, there is no need for a “SAVE FERRIS” style water tower. (Probably ever, actually.) To avoid the labor cost of hypothetical and unnecessary painters, you can subscribe to this blog by clicking the blue “follow” button on the right side of the page and receive an email update each time I post. Is your inbox as crowded as mine? You can add this site to your bookmarked pages.

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“Save Christina” doesn’t have the same ring to it, anyway. (Image credit.)

 

PLEASE TRY NOT TO…

  1. … ask me lots of questions about future plans.

I honestly don’t know if I will be able to come to your retirement party/bris/dog’s birthday party. I don’t know how my medication will make me feel on any given day. If you want to invite me somewhere, rest assured I’ll try to be there if I can! (I love parties and free food!)

I don’t know what happens once my first round of targeted therapy is over. There’s a lot up in the air at the moment. Instead of asking me about future treatment, you can ask me questions about how I’m feeling today, about my doctors, and if I am excited about the upcoming season of The Crown on Netflix featuring Helena Bonham Carter. (That answer will be yes.)

  1. … treat me like I am sick.

I want to do as much for myself I can because I am independent, stubborn, and as of right now, not incapacitated. (Fun fact: my first sentence was, “I do it myself.”) If you sense I may be struggling with something, a simple “can I help you with that?” goes miles before assuming I am unable to do something.

  1. … come see me in an overly emotional state.

It’s understandable that you’re upset or shocked about my diagnosis. I would be upset if any of you were diagnosed as well! However, I am focusing on taking care of myself at the present time. If you get a little teary, that’s okay. (I’m bound to as well.) But if you’re sensing a beating of your chest or Nancy Kerrigan style breakdown while shouting “why?!” coming on – a visit may be better at another time.

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Why?! (Sorry, Nance.) Image credit.

I encourage you to seek the support you need as you process this information if it’s deeply affecting you. Therapy is great! Everyone should get therapy! Being in nature or with a pet is also great. In summary, do whatever helps you to process things in a healthy, realistic way.

  1. … assume you know my cancer.

Ok, this is a big one and a hard one. I’m almost 100% sure I’ve broken this one myself. You want to help and you feel powerless: I have, too.

There are a fafillion different kinds of cancer. Mine is going to be different than the next person’s, even if we have the exact same type of cancer. Mine will be different. Desmoid Tumors are rare and rather mysterious. We don’t know much about them or how they behave. I am probably not going to look like most cancer patients you’ve known, because this cancer and its treatment vastly are different than others. If you’d like to offer some information you found, a service, or some treatment, thank you! But full disclosure: I may not take you up your offer or put your recommendation into practice.

The same goes for natural remedies and the like. (FYI, I’m already pretty hippie crunchy granola to begin with, and while I love essential oils, I’m pretty sure they won’t cure my tumor.) If your aunt’s cancer was cured by eating nothing but oranges covered in pink Himalayan salt, that’s great! Thanks for mentioning it, and perhaps I’ll investigate and see if I can find some science to back it up. I’m trusting my gut, some research, and the wisdom of my doctors.

  1. … expect sunshine and rainbows all the time.

I’m going to do my darndest to stay positive, to look on the bright side, and to embrace this all as an adventure – but I can’t promise I’ll be able to do this all the time. Hey, some days, I might just be tired and we both might need the comforting words of Fred Rogers, national treasure and Best Neighbor Ever.

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Mr. Rogers, you were the hero we did not deserve. (Image credit.)

Please be patient as I work through the hard days… and if you want to be safe, approach me with chocolate in hand.

 

appointments

Making a Plan

 

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My new second home! (Image credit.)

 

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.

 

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Yes, please. (Image credit.)

 

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.

 

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Sally, humanoid ragdoll. (Image credit.)

 

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.