Did you know chemo can cause issues with your teeth? I didn’t- But now I do!
Because I need a root canal.
Musical theatre reference courtesy of Steve Martin. Image courtesy of pinterest.
Here’s the scoop: I’ve had a spot of sensitivity since my last cleaning in December or January. (Who really knows when; it’s all a blur.) Then I got diagnosed, started my medication, and bam! Excruciating pain since last Friday. My oncologist advised me to hold off on my medication to see if it was a side effect. No such luck. I went to the dentist this past Wednesday. I was x-rayed and the proclamation was made: it was time for a good old-fashioned drill party. (But first, I needed my doctor’s approval and over a week of antibiotics to make sure an infection doesn’t occur.)
Evidently, when you are on my medication, it can cause dry mouth. Not a huge deal, but your saliva is actually a key player in making sure debris doesn’t hang out in your teeth for too long. (Everything bagel or not, all food needs some help.) No saliva leads to more hidden issues, which leads to more cavities. Or in my case, do not pass go, do not collect $200, get a root canal.
This Thursday, I’ll have my tooth root-canaled (is that a verb?), head into school to run a 1 PM rehearsal, then hopefully get cleared to start my medication again.
By the time I get started again, I’ll have been off my chemo meds for about two weeks. That doesn’t seem like a lot, but even if my tumor hangs out and doesn’t grow in that time, my body already has no idea which way is up or down. Right now, it’s having a full out MTV Spring Break of a time. “No medication?! Awesome! Here’s your energy and appetite back! Go wild!” Next week, I’m anticipating a bit of a challenge as I get acclimated all over again.
I’m trying to think of this as less like a road block and more like a detour. I have a lot of great things to focus on: the astounding progress we’ve made with the DTRF Fundraiser, the great retreat I went on this past weekend, and a musical opening this Friday that I’ve been working on since November. I’ll be honest though: even when I feel Pollyanna about it, I’m still in more pain than I’d like and have developed a borderline addiction to Orajel.
The moral of the story: if you have a diagnosis like mine, even when you brush and floss, expect the unexpected. The detour will arise inevitably. Best advice I’ve got at this point: pack easy-to-chew snacks and have people you like along for the ride.
My Unicorn Squad shirt is my go-to. It never fails to spark a conversation or a smile!
My birthday is coming up in two weeks. (Thanks Mom for giving me an easy-for-others-to-recall “Cinco de Mayo” birthday! Also, I’m sorry for hanging around for so long when I was due in mid-April.) I’m turning 29, which is not a milestone birthday by any stretch of the imagination, but it’s the most special birthday to me so far because I’m alive. And that means an entirely different, more wonderful thing than it has in years past.
I kindly decline presents or cards, but if you feel inclined and are able, I’d truly appreciate donations to my fundraiser for the Desmoid Tumor Research Foundation.
This post is hard for me. I don’t like asking for things and just writing about this makes me feel vulnerable and a little of self-serving. But the DTRF is the best chance I’ve got for effective treatment and long-term care, since they’re the only organization in the world dedicated to the research of my diagnosis.
The DTRF is a small organization and fundraising is key. Here’s why every dollar counts:
There is no FDA recommended treatment for Desmoids.
My doctors don’t know how Nexavar, my chemo medication, works.
Currently, the most “cutting edge” research is that Nexavar is more effective than a placebo.
I believe that with more funding, we can do better than that… and truthfully, I need us to do better than that.
There is no such thing as “only $5.“ Trust me, that’s $5 closer to me keeping several bones and muscles, figuring out a way I can get treated, and even making it possible for me to do a cartwheel again or not get stuck in a hoodie as I try to take it off.
I’ve created a fundraising page where you can make a donation to the DTRF and their annual 5k, Running for Answers. There are so many worthwhile charities and causes out there, but this one in particular has been my lifeline since February. I would love to make sure all patients with this rare diagnosis are served in the same way.
Most importantly: thank you, thank you, thank you for all of your constant kindness and support. Your comments, text messages, and phone calls have proven to me, time and time again, that it’s possible to live an extraordinary life even when your life has been turned upside down by a diagnosis. I am unfathomably lucky.
Click here to donate – and l will do a dance in your honor! (Honest to goodness. Footage available upon request.)
I got out of dodge just in time to avoid that latest snowstorm and enjoyed some traveling and some sunshine. I squeezed in time for a second opinion on treatment as well: an update on all that will come soon.
With the sand of the Atlantic and Pacific beaches freshly shaken from my flip flops, I encountered that common experience of coming home from a vacation and being smacked in the face by reality. Instead of denying it exists or shoving it in some emotional drawer, I decided to do what I find helpful: make it a blog post, so we can all get uncomfortable together!
Just in time for your Easter or Passover gathering!
Drop It Like It’s Hot Not Socially Acceptable to Discuss In Public
There are some topics people advise you to avoid at dinner parties and in polite conversation. Cheif among them are money and religion. We all have some relationship to both subjects, even if it’s a lack thereof.
I don’t mind talking about money because I’m a millennial who likes avocados. (If what I’m saying sounds strange, read that linked article. It’s a riot.) To top things off, I teach theology at a Catholic school. I’m well on my way to being the rudest person ever! So in the style of the 1990s Real World, let’s “stop being polite* and start getting real.” (*As a personal side note, politeness is a personal tenant of mine. In this instance, we can replace polite with “taboo.”)
I’ll use any excuse I can to make a musical theatre/Liza Minelli reference.
Money I get medical bills in the mail constantly.
Every single one makes me panic a little and/or cry. Yes, even though I have health insurance from my employer. Yes, even when I have someone explain it to me. Yes, even while I understand medical care is expensive and qualified people need to be compensated. (It doesn’t help that my policy is technically two companies with separate plans and they don’t communicate with one another, but that’s for another day.)
Medical debt is the leading cause of bankruptcy in the United States. Let that sink in for a bit. It’s absurd. Many of you may already know it. While you are busy saving your life, you are pretty likely to lose your shirt.
When you have cancer, you are constantly paying medical bills. Yes, even though you “beat” it. Yes, even when you are “in remission.” Yes, of course, I’m happy just to be alive. But my expenses have changed drastically. My diagnosis in particular has an extremely high recurrence rate: 30% have a recurrence within five years of initial diagnosis. I will be cut open, treated, or at the very least, scanned every year for the rest of my life. That means I will likely reach my maximum out-of-pocket expense for as long as I live- regardless of what insurance plan I have.
I am a teacher. No one gets into teaching for the money. The money that I started to put aside for a (tiny) home is now dedicated to keeping me healthy. Here’s where things get complicated: while I admire the lifestyle, I am determined not to live like a monk. I want my expenses to be a reflection of life and not a fear of death. My trip to California made me feel great, gave me memories, even alleviated some of my side effects: worth it. A private restorative yoga session with an amazing teacher helped me find some peace with my body: done.
This is not a money grab nor a plea for sympathy. The reason I’m being vulnerable and borderline uncomfortably honest with you is this: those gofundme and youcaring sites asking for help with medical bills are not for people who are any less hardworking or deserving than you and I. They are for people who need help to make ends meet when life has not gone according to plan. If Notorious B.I.G. taught me anything, it’s that money doesn’t solve problems, but it can alleviate some worries. When you have a diagnosis like cancer, you’ve got enough to worry about and money, unfortunately, is nearly always one of them. Have faith knowing that if you are moved to donate, you’re contributing towards a peace of mind that allows people to focus on their disease and not their declining bank account.
A Disney and a Shakespeare nod in one? Double win.
Religion People will say things that hurt, even when they don’t mean to.
I didn’t give anything up for Lent this year. Instead I practiced patience, especially when people said things that were hurtful. (“Father, forgive them, they know not what they do.”) There is not a lot in my life I can control, but I can start by bettering myself.
There are people that look at me with pity, as though a bell will ring and I will get my angel wings at any moment. I observe them looking for signs that I’m healthy or that I’m not- I’m fairly certain I more or less look the same as I did a few months back. I don’t fit the “bald and brave” image of a cancer patient that may come to mind given television, movies, or even personal experience. I know this reaction is well-meaning and coming from a good place and usually more about the other person than me. Maybe it’s bringing up painful memories of loved ones with a similar struggle or their own fears of mortality. I get it. I was there once, too. They’re scared, that’s okay.
To counteract that, I like to be one step ahead of the joke. I’ll lift something potentially heavy and quip, “I should use this arm while I’ve got it!” Or, as previously mentioned, I don’t use traditional household cleaners, and I’ll justify it with “using them is linked to causing cancer.”
Other times, people say things which unintentionally minimize my struggle.“Look on the bright side!” kind of comments or comparing suffering is not always helpful, even when well-intentioned. Yes, I sometimes make “it can always be worse” comments because some days that’s where I am. But on the days when my fingers feel like they’ve been shut in a car door or I have no appetite and the thought of eating anything makes me sick, I’m not interested in the bright side.
When this happens, I remind myself to take a deep breath. I use what Brene Brown calls in her book Rising Strong the “hypothesis of generosity.” Brene suggests that you ask yourself in these challenging encounters, “what is the most generous assumption you can make about this person’s intentions or what this person said?” Often I come back to the same conclusion: it’s more about the other person than it is me. The people I love don’t want to see me suffer any more than I do, and it’s more comfortable to think that things can always be worse. Or there just might not be words to capture what either of us is feeling: cancer’s awkward.
In Christian tradition, today is Holy Saturday. It’s the day between Good Friday, when Christ’s death is recalled and Easter when the resurrection is celebrated. One of my favorite Jesuits (yes, I have favorite Jesuits) Fr. James Martin puts it this way: “Most of our lives are spent in Holy Saturday. In other words, most of our days are not filled with the unbearable pain of a Good Friday. Nor are they suffused with the unbelievable joy of an Easter. Some days are indeed times of great pain and some are of great joy, but most are…in between.” My days since my diagnosis have become mostly a Holy Saturday type of day. I’m wedged between the grief of knowing my life will never be the same and the astonishing bliss of simply being alive.
True faith, to me, isn’t about either/or: it’s about both/and. Things don’t fall neatly into the categories of good or bad. Life can be painful and hard; it’s also astonishingly and profoundly beautiful. Cancer is a burden and a teacher. Money is a blessing and a curse, religion is hard and it makes somethings easy: talking about them is uncomfortable and necessary.
Whenever I leave this place, I hope I leave it better than I found it. It’s my hope that I can use this complicated mess I’ve been handed and become a force for understanding – this little blog my attempt at that. Perhaps it goes without saying, but without readers, it would just be a call out into the digital void. (If a blog is posted in an empty forest and no one is there to read it, does it make a sound?)
Thanks for reading, and if you made it through this whole post, thanks especially for getting uncomfortable. Stay tuned for my next entry: racial justice and politics! (Just kidding… though I do talk about those things often! Feel free to reach out if they are of interest to you as well.)
March 15 gets a pretty bad rap, historically speaking. At the very least, it’s likely full of bad Caesar Salad jokes.
Dressing cracks notwithstanding, today represents three things in my cancer adventure: a chance for check-in, celebration, and reflection.
Check-In
I started my morning with a follow-up with my oncologist. It’s been two weeks since I’ve started an oral chemo drug, and so far, my side effects are manageable. There’s the usual cast of characters: decrease in appetite, fatigue, muscle aches, and nausea. There were some surprises thrown in for good measure. For a few days, my fingers felt like they were constantly being pinched by clothespins around the mid-point of my nails. (Lovely!) While that’s gone away, the soles of my feet are now really sore. It’s painful to walk barefoot, so I’m keeping slippers on when I’m at home and temporarily trading patterned socks for my padded running socks.
I shudder just looking at them.
I’m cleared to continue taking my meds and we’ll meet again in a month.
A Celebration
Side effects aside, today is a celebration of sorts. You may recall that before my oncologist suggested I try chemo first, my thoracic surgeon had tentatively scheduled my surgery for today. (You can read all about that conversation here.) Instead of starting my day with Honey Bunches of Oats and a cup of coffee, I could have started it at Penn Presbyterian, preparing for a ten-hour surgery.
My sore feet are a small price to pay for the extra time and hope chemo has given me.
A Reflection
Today marks one month since I received my diagnosis. Writing that seems like an impossibility: only a month? Time has become an elastic concept: it stretches long as I wait for appointments or phone calls, then snaps inexplicably short when I try to remember a time before desmoid tumor statistics rolled off my tongue like familiar lyrics to a reverent song.
While it’s true that a diagnosis like this changes your life irrevocably, I’ve marveled at the unexpected ways that my life has remained unaltered.
What’s Changed
1. I’m relieved to know what I’m up against.
For months, I pinballed from appointment to appointment, telling the same story each time to a different doctor. I was told to do rotator cuff strengtheners, take anti-inflammatories, consume more Tumeric. Most doctors were compassionate. One scoffed at my distress at the news that no lipoma was found after two hours in the operating room and later implied I was overly emotional. I was beginning to believe that the problem was somehow mine. Thankfully, the team at UPenn took me seriously, ignored the fact that my bloodwork showed no warning signs, and got me in for a biopsy, plus specified scans and testing.
For two weeks, I waited for biopsy results, wondering what kind of time I had. Those two weeks were the hardest. No amount of immersing myself in work or distracting myself with Netflix kept the fear at bay. When the news came and my doctor told me what the pathology revealed, I was surprisingly calm. I immediately hopped online to do research. I made phone calls to family and friends. I found an incredible, supportive facebook group for patients with desmoid tumors.
Most importantly, I began to make peace with something that had been a part of my body for months and finally, finally had a name.
2. I’m asking different questions. Decisions and considerations I never expected to make at age 28 have become important. What’s the process to go on disability? Will my treatment someday impact the kind of family I could have? What’s a good name for a cancer treatment blog? My amazing crew, now deemed the Unicorn Squad (thank you, Bonnie!) have listened to the questions I’ve felt brave enough to voice and helped me prioritize questions and navigate the answers.
I’m not writing my own obituary, by any means. But I’m certainly soul-searching, asking questions, and flagging potential decisions I’ll need to make to ensure the contents are every bit as awesome as I dream them to be.
3. I’ve reconnected with many old friends and made some new ones, too.
Have you heard that analogy that compares each person’s life to a pebble on the surface of a still lake, casting out ripples that stretch far and wide? (Well, if you hadn’t before, now you have!) It’s been true for me, of late. My inbox has been populated with emails of support from teachers I had in high school, colleagues of my parents, friends of my siblings, and friends with whom I’d lost touch.
I’m relieved that despite my faults and flaws (both those I am humbly aware of and those which I’ve yet to discover), I have not been a complete Scrooge McDuck.
Humbug.
4. I’m crying more, but not because I’m sad.
You know that Hootie and the Blowfish song? Darius Rucker croons in his signature baritone, “I’m such a baby cuz the dolphins make me cry.” Well, Darius, we’re two peas in a pod. As a self-identified sensitive person, I have always been emotional. I remember crying like I was experiencing a mid-life crisis the first time I heard “Rainbow Connection” in elementary school.
Candid photo of me when my student said something heartwarming in class. “Talk among yourselves.”
I’m less ashamed now of my rich emotional life (what a theater major term!) but in recent weeks, the tendency to get choked up has increased. I’ll catch my students making beautiful moments on stage, overhear them wishing out loud that they had drama every day, or God forbid, Louis Armstrong’s “What a Wonderful World” starts to play… suddenly, I’m the Mom in a car commercial, watching her baby pull away from the curb in a safety-standard sedan. When news got out at my old middle school, where my Dad teaches, one of his eighth graders came up to him. Clearly emotional, he started “Mr. Kos, I don’t have a lot of money… but if your daughter needs anything…” Oh, my heart. I can’t type this without becoming verklempt!
So if we talk and I need a Kleenex, never fear. My tears are often an outward, salted expression of my gratitude.
What Remains the Same
1. I still consider myself a healthy person.
I’m protesting the word “sick.” As one of my favorite health figures, Kris Carr, points out in her books, we’ve got to expand the concept health to include people whose cancers are slow-progressing or indolent. I called myself a healthy, active person before all this tumor nonsense, and yeah, I still do. With this thing in my body, I walked 500 miles across Spain in July heat (“on cheese sandwiches alone!” my incredible pilgrimage buddy observed). I can teach elementary students full time, which is a superpower in and of itself. I still run a few miles each week and even my pace is relatively unchanged.
Unbeknownst to me, my time on the Camino was itself an act of faith and defiance. My drive to work is a declaration that I will not let this diagnosis define me. Each run has become a victory lap: I’m healthy and strong.
2. I am still laughing and making jokes.
Probably more than I should in appointments, but who makes those calls anyway? I made the decision early on that I would not, as much as humanly possible, let this disease steal my laughter. Case in point: I’m a pretty committed natural products user. When my mom asked why I used a non-toxic essential oil concentrate to clean all my surfaces, I deadpanned: “traditional ones can cause cancer.” Dark, yes, but we both laughed.
I want my unicorn squad to be okay. If I use jokes to make it okay, then so it is.
3. I am making plans.
As Lin-Manuel Miranda wrote in Hamilton, “I’m past patiently waitin’/ I’m passionately smashin’ every expectation/Every action’s an act of creation/I’m laughin’ in the face of casualties and sorrow/For the first time, I’m thinkin’ past tomorrow.”
I bought myself time with chemo, and I’m determined to put it to good use. I love adventures, and by letting go of smaller commitments, I’m dedicated that energy back to things that will make a difference in my mind and health. For now, that means booking a flight to Los Angeles over Spring Break, in addition to the Florida trip I booked in December. Though I usually hate celebrating my birthday, I am planning a party for the first time in ages, as welcoming a new year has taken on a new meaning.
I’m making my tomorrows count. (Hey, that’s got a ring to it. Does someone want to trademark that for me?)
4. I am still happy. One of my favorite poems is Desiderata by Max Ehrmann. He closes with this:
Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.
This past month has included lots of noisy confusion. Despite it all (or is it because?) I’m still happy.
If there’s one thing I’ve lived by in my 28 years, it’s this: When the going gets tough, the tough get organized.
I often joke that I am type A down to my blood. (I’m type A positive.) My innate control freak nature has been softened over the years through meditation, mantras, and lots of life lessons. What’s left is essentially an elementary school teacher motto (“Do your best, forget the rest!”) and a solid appreciation for office supplies and organization.
It should come as no surprise, then, that when my life was sent into a dramatic upheaval at the end of January, I reached for my best coping strategy: organize it… and for Pete’s sake, make it look pretty.
Why? Well, the two-pocket folder containing documents from my surgery in September was bursting at the seams. When I needed a place to keep all of my documents back in the fall, I naively thought the situation was temporary, so why spend time on a fancy binder? But after my diagnosis, just looking at the thing made me my blood run cold. There was nothing colorful or hopeful about it. While there were so few things in my control, my binder was one of the few I could manage.
One of my rockstar cancer survivor friends sent me in the direction of Michaels, hinting that the DIY method might be right up my alley. (She knows me well.) Here’s the thing: if you’re a three-hole punch, black “High School Chorale” style binder person, more power to you. I wanted something that was less reflective a diagnosis and more representative who I was as a person. My mom and I spent an arguably absurd amount of time in front of the binder display, debating the merits of a rose gold vs. a teal cover and discussing the kind of dividers we might need in the future.
I’m too ashamed to tell you the total I spent on binder supplies, but I promise that it was done with coupons and teaching discount in hand. I left the store feeling lightyears better about the pile of paperwork, business cards, and medical imaging that would fill the pages. It had nothing to do with the content itself: the reason I felt great was that this binder was suddenly more me.
Maybe she’s born with it, maybe she spent a few hours watching Netflix, obsessively hole punching medical records and thoughtfully arranging pre-punched pocket folders.
In an effort to make this blog a resource for patients who have been recently diagnosed, or if you’re just curious, here are things I added to the binder:
A section on critical contact information for me. It’s easier to copy my Primary Care Physician’s address than to look it up on my iPhone, and I can be sure I’m not giving the wrong zip code for one of the many NJ towns in which I’ve resided. (08043? 08648? 07940? The list is too long to count.)
Copies of my insurance and prescription cards. Especially handy if I someday forget to bring the originals.
A list of current medications I’m taking... plus their frequency, dose, and reason for taking them. I also include the vitamins and supplements I take.
A 2017-2018 calendar with significant dates. I prefer a monthly view: that way I can reference my immediate medical history, doctor’s visits, procedures, and testing with more specificity during appointments.
A section on contact information for my UPenn doctors. I’ve already met with five doctors. Each had at least one Physician’s Assistant or Administrative Assistant. There’s also the file room at the hospital and several pharmacies which I use. When you take into account all my current doctors, plus my previous medical care, that’s a lot of info. I have their numbers in my phone, with UPenn as the last name for reference, but it makes it easier to have it all in one place.
Looseleaf paper. It’s a space for doctors to draw pictures, my own quick doodling in the waiting room, and the jotting down of questions ahead of appointments…. not to mention the concept of leaving space for possibility.
A unicorn sticker. Totally optional. (For me, a non-negotiable.)
And there you have it, my grown-up Lisa Frank creation. I wouldn’t go so far as to say I never leave home without it, but I’m certainly looking to debuting my masterpiece next week at the two-week follow up with my oncologist.
Thank you again, as always, for your countless kindnesses. They have carried me on my way so far and will continue to keep me going in the times ahead.
Why thank you, binder! You’re pretty great yourself. (This goes for you too, dear reader. Keep on rockin’ in the free world.)
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…
… 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.
… 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.
… 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.
“Save Christina” doesn’t have the same ring to it, anyway. (Image credit.)
PLEASE TRY NOT TO…
… 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.)
… 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.
… 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.
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.
… 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.
… 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.
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.
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.
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.
My name is Christina, and I have desmoid-type fibromatosis.
Don’t know what that is? Most people don’t! Let me break it down for you. DTF is a rare condition that impacts 2-4 people in 1 million each year. As one of my doctors put it, I’m “the rarest of the rare.” So rare in fact that I like to call myself the unicorn of cancer patients! Some people consider it cancer, some don’t. (In fact, even my team of doctors disagrees on that point.) The bottom line is that it’s really important that DTF is treated just like cancer – specifically, sarcoma. My desmoid is located within my chest wall, behind my right clavicle.
Bottom line, I’m 28 and my life is not going to look typical anymore. (Let’s be real, I’ve been typical before, so why start now?)
You may have stumbled on this page because you know me or my family, heard about my story, or perhaps you yourself are a Desmoid Tumor patient. This blog will document my recent diagnosis, updates on my treatment, and my continued adventures. Please keep in mind that Desmoid Tumors are rare and much about them is still a mystery. My experience is going to be different from the next patient’s.
Regardless of how you landed on this page, I invite you to reach out and say hello! If you’re a Desmoid patient, I want you to know you’re not alone. I’ve found comfort and advice in Facebook groups and want to offer my own resource. You’re welcome to contact me at any time by using the “Contact Me” link above.
Thanks again for visiting, and I’ll be updating soon!
Girl Meets Cancer 