Down the Rabbit Hole

Remember Alice and her “adventures” in Wonderland? She falls into this hole, knows no one in the new world she finds, and feels like she doesn’t fit in at all. That’s exactly what it’s like to be a young adult with cancer…and I feel like especially my type of cancer (head and neck…specifically tongue).

“It would be so nice if something made sense for a change!”

Lewis Carroll, Alice in Wonderland

I’ve only been in this elite club for a little under 2 months now. However, it is REALLY hard to find supportive people close to my age who are going through the same stuff! I’m happy to have found a few through my Instagram account and Facebook, but overall we are kinda just floating around hoping to miraculously bump into one another. And it’s so rare, finding someone actually near my hometown is basically impossible.

Now, don’t get me wrong. I’m happy to have met warriors of other types of cancer in my age group. I’ve gained more perspective and wisdom from them than most people I’ve met in real life. But we all have different struggles and treatments so while we can discuss cancer being a jerk in general, we can’t connect in the same way as someone going through the same type if that makes sense. I know what it’s like to have half my tongue removed and replaced with my arm tissue, but no clue what it’s like to have my breasts removed. But we both understand that drains are the bane of our post-op existence and lymph node removals and the resulting issues are awful. So we can connect on some levels but not the same as someone who has the same course.

It’s also interesting to me that I actually feel guilty that I’m not getting chemo. I have Stage 3 cancer so the treatment is surgery then radiation. I’m incredibly grateful that I don’t need chemo at this stage, but part of me feels like I’m “less” of a warrior because I won’t lose my hair. I think this is partially a media thing and partially because so many of the more common cancers require chemo as a first or second line treatment. And again, most of the people I meet have other cancers. So I wind up feeling bad that I can’t relate at all to the chemo chats. I don’t want to say I feel left out, because again I’m grateful I don’t need it…but it does leave me on this sort of lonely island with my personal cancer experience.

Also, people tend to treat people with head & neck cancer like we caused this to happen. Maybe it’s the same with others as well, but it really irks me every time I tell someone and the first question is “do you smoke?”. No, I’ve never smoked cigarettes. I don’t drink very much at all. No, it’s not HPV+. My radiation oncologist offered genetic testing but it wouldn’t tell us much because as of right now NO ONE KNOWS WHY YOUNG, HEALTHY ADULTS GET ORAL CANCER. I get that people are probably just trying to protect themselves, the magical thinking helps them feel secure that this horror won’t befall them, too. And I try not to get upset about it, but it really feels kinda shitty when you know people are assuming you brought this on yourself somehow.

So I’m stuck in this world with very few guideposts and even fewer comrades to walk with me who understand what I’m going through. I’ve met the nicest, most genuinely good-hearted people but still feel alone in a big way.

If you’re like me and you’ve just fallen down this rabbit hole and are feeling lost, please reach out. Maybe together we an create a beacon for others in this boat. Also, for anyone going through any cancer but especially head & neck, I highly recommend checking out Elly Brown’s story and her videos at Also, I met a super rad woman who is a Speech Language Pathologist and also went through oral cancer. You can check out the awesome resources she’s put together at


Some days are harder than others and I’m really not sure why. However, this was true in life before cancer as well so perhaps it’s my depression, anxiety, hormones, or a healthy dose of all 3. Regardless, at any given moment a hundred thoughts are flying around my head, and today I happened to grab onto the not-so-happy ones. So, to illustrate what goes through my head even though I always seem to have my shit together:

1. I have fucking cancer.

Like…what the hell. It still doesn’t seem real to be honest. I want so badly to cling to the hope that they got it all with surgery, but the fact is that is completely unknown. I had a lymph node involved, which means although not far, it was already spreading. It could have spread to the other side of my neck, we didn’t dissect that side (but we will irradiate it). There could be microscopic cells biding their time until they can build their evil little cancer empire (this is a whole story in my head and if I develop the patience to draw, could make one hell of a comic). Anyway…I’m freaking scared. Terrified at times. For all the stories of people in remission for 5, 10, 15 years there are just as many who get a scan and hear “recurrence” or “metastasis” or “incurable”. Which brings me to my next thought:

2. This isn’t something that I can “put behind me”.

I know my family and friends mean well when they say things like “pretty soon this will all be behind you/us!” I appreciate the sentiment and they’re partially correct, this leg of the journey will indeed be over. But for me this is forever. I will always worry about every new pain, itch, lump, cough, etc. I will continue to see my doctors for years after I hopefully get a NED (if I get there, I really really hope I do). So many people think “oh, they cut the tumor and lymph node out, you’re cancer free now!” But that isn’t how cancer works. And since we have NO idea what caused this, it’s not like I can change any modifiable risk factors.

3. I have no control.

Well, that isn’t totally true. I can control my thoughts and response to those thoughts (hence this cathartic post), but as far as the cancer goes, it really is a crapshoot. One with statistics and best chances of course, but no guarantees. Growing up, that was one of my biggest struggles and it turned into full-fledged anxiety as an adult. I have this insatiable desire to know everything because it gives me a sense of control. However, I’ve also learned over the last year or so that that’s a horrible defense mechanism and it’s best to just let go and let life happen. And usually I’m pretty good at that recently. But then there are days like today where it just rears its ugly head and I find myself Googling “Stage 3 tongue cancer prognosis” and spiraling down from there.

4. I’m still mourning “the old me”.

I’m sure to some people I don’t seem all that different. The changes on the outside are fairly minimal: a few scars, a new speech pattern, taking a bit longer to eat and in smaller bites. But to actually LIVE this has changed me. It isn’t all bad; I feel like I’ve gotten more confident and accepting of myself as a whole (which seems odd) and I care SO MUCH LESS about petty drama. These were things I was already working on before my diagnosis but the cancer kind of boosted the process. Those are the good changes that I’m grateful for. The parts I miss are mostly things we all take for granted.

I miss being able to go to a restaurant and order a burger and bite into it. I was such a fast eater before. Truly it’s probably a good thing that will only help me keep my weight under control in the long run but man…I miss it. And I miss being able to stick my tongue out for silly pictures with my son (or anyone, really). It was my signature move. I miss being able to kiss without really working to get my lips right and not drool. I miss being able to lick the pudding off the top of a snack pack or the ice cream off a spoon or the batter off the mixer (salmonella be damned). I miss my damn tattoo on my arm even though it’s pretty badass that it’s on my tongue. I miss being articulate and a good speaker and not sounding like I’m playing Chubby Bunny 24/7. I miss singing (horribly) at karaoke. I miss all the plans I put on hold. I miss being a nurse. And, though I assume it goes without saying, I miss being a mom to my son most of all. I know some of these things will return with time but they’ll never be as they were. I’m still working on accepting this new reality.

5. This could kill me.

Yeah, the odds are in my favor for now…but, as mentioned above, they’re just odds. Usually I’m fairly optimistic but I’d be lying if I said the thought doesn’t cross my mind that this could turn terminal at any time. I’m young, relatively healthy, active.. but I’ve met so many other people online who were all those things and still got dealt the shit hand of terminal illness. We (especially Americans) tend to cling to the Just World fallacy with such tenacity. If someone is good, does all the right things, then they’ll have a great life and if someone is bad and does the wrong things they’ll be punished. It’s a wonderful little tale to help people sleep better at night I guess, but it’s complete bullshit. Not only do previously perfectly healthy, altruistic, compassionate individuals wind up with cancer (or some other horrible fate) but CHILDREN die daily of this stupid disease. Can’t be much younger or healthier than a kid. Yes, some make it (I know one such miracle boy) but many don’t. And I don’t have an algorithm to tell me how to increase my odds of living a long, happy life so it crosses my mind that this could be the beginning of my end and that’s something I’m working on accepting as well.

Sorry this turned into such a long post. I just had to get some things out I guess. Just know that even though the people you see as shining examples of courage seem to have it all figured out, they don’t. They still have bad moments or days and they still cry and get frustrated and angry and bitter. But, they also always find a way to stand tall and walk forward again.

Emotion Sickness

Riding home from the hospital was supposed to feel liberating; I expected relief and a “breath of fresh air”…but what I got was crushing anxiety and depression. We drove past a 7-Eleven, not usually a particularly emotional event, and I started tearing up. “How can I go on a short trip?! I won’t be able to stop for snacks. I can’t eat hard food! No one sells pureed food.” Panic started setting in then. How would I do X, Y, or Z with the “new” me? What would people think? How would I talk on the phone? What if I don’t heal any more than I currently am? Once those “what if’s” start, you’re screwed if you don’t stop that path right where it starts. Instant spiral out of control.

We got to my neighborhood and people were walking dogs, kids were riding bikes…completely mundane, normal stuff. I held back a sob. I was jealous. I wanted a normal life. I wanted to be playing with my son, asking how his first day of First Grade went, doing the ridiculous amounts of paperwork.

Instead I helped my parents unload essentials for my shower/dressing changes as best I could and walked into my house. Walking into your own home after some time away is always weird because you realize your house has a smell, its own character you just don’t realize when you’re there all the time. It felt foreign, not at all comforting. I saw my cat and wanted to snuggle him and I couldn’t figure out how with all the tubes and dressings and the inability to use my left arm for much. I felt useless and hopeless.

Determined to get myself showered and go surprise my son at his dad’s house, I ambled slowly up the steps to my bathroom. My legs were so weak. I was out of breath by the time I got to the top. I wasn’t prepared for that reality, either. I got into my room and the tears just started to flow. Hitching sobs, snot everywhere (do you have any idea how hard it is to blow your nose when one nostril has a tube sutured in it, you have a hole in your neck you have to cover, and one arm is unable to do much??), drooling on my floor because I couldn’t control my swallow and my tongue enough to stop it. My mom came in and hugged me and asked what was wrong and I don’t even remember if I had an answer other than something like “I hate this.”

And that, my friends, is when the anger and denial both hit around the same time. Oh, those stages of grief. I locked myself in the bathroom (genius in my condition) and started to (try to) undress myself. My dad had wrapped saran wrap around my arm so it was even more stiff and unusable. My NG tube was dangling out of my nose, pulling on the sutures because I hadn’t taped it to my face yet. I looked in the mirror and saw marks from all the EKG leads and tape, saw the wounds from the drains and bruises from needlesticks and the swelling of my face and my ridiculous huge tongue and my eyes red from crying and I got PISSED. This isn’t supposed to be me! This isn’t how my life is supposed to go! My mom heard me crying and asked if I was ok. I, in my state of mental mush, flipped out. I opened the door and yelled. I said some pretty mean things, actually. I slammed the door and basically said fuck it, I’m getting in this stupid shower by myself if it kills me.

I didn’t realize how difficult it would be to shampoo my hair one-handed…especially given the fact that I bought massive shampoo bottles because they were cheaper. I tipped the bottle on its side, and pressed down with an elbow and tried to get a little in my right hand. What actually happened was most of it went on the floor and a tiny bit made it to me. Once the hair was somewhat washed, I realized washing my body would also be difficult with one hand…because my right hand cannot wash my right arm. So I wedged the loofah against my arm and the shower wall and sort of wiggled against it so I felt like I at least did somewhat of a decent job. I didn’t even attempt to wash my face with the trach stoma and NG tube…too much.

So I exited the shower, slightly triumphant but also bitter about how much I didn’t think about that I would need help with. Sort of a smug yet pissed off attitude. I can’t really remember what happened next, maybe something to do with my mom needing to help me put on a bra (not fun) and her not having brought my “favorite” bra home and the one I had not fitting as well…and the anger reared its ugly head again.

Every sob I had stifled in the hospital. Every bitter thought, every sad thought, every negative energy I had done my best to push down erupted like an angry, pent-up volcano. Half-naked, hair a tangled mess I screamed “I can’t do this!” and I slammed my palm over and over into my mirror that hung on my bathroom door. The mirror shattered. My mother was screaming in the background, and I realized I done REALLY effed up with tiny pieces of glass stuck in my hand and all over the floor. My dad rushed upstairs, tried to calm me down. Someone got a vacuum. A brush pan. Took the mirror down. I was a crumpled mess sobbing on the toilet about how I couldn’t do this and how I had glass in my hand and I didn’t know what to do and I was so sorry.

I don’t really remember pulling myself together, but I know I did because I got dressed. I combed my hair. I hugged my parents and we assured one another we were going to get through this. And I went to see my son.

Seeing my son for the first time in over a week after my hemiglossectomy, radial free-flap, and neck dissection

Since that day I’ve had moments of tears, moments of frustration (especially trying to eat), but no more massive meltdowns. I heard from another tongue cancer warrior that we all have one big breakdown. Prior to surgery I hadn’t really come to terms with the fact even that I had cancer. I was probably in denial, honestly. After surgery I was so focused on recovery and getting out of the hospital I didn’t really think about how drastically different my life was now. But when I saw all the normal parts of life again and was forced to admit I was no longer part of that, that’s when it all came crashing down I think. Not to say I’m not as good as someone without cancer, or that my life won’t get back some degree of normalcy…just that it is now forever changed and will never be the same. So now my work is on accepting that change, realizing that none of us has control over anything but how we react and respond to situations around us, and learning to let go and trust in the process of just being.

The C Word – How it All Went Down

I am a fairly healthy 37 year old female. I’ve never smoked, drink rarely, and have no family history of cancer. I remember finding a sore lump under the left side of my chin and asking a doctor I work with if I should be concerned. A friend had just been diagnosed with Lymphoma and another with Neuroendocrine cancer, so I thought I was probably just paranoid. Then I remember finding the lump on my tongue not long after because it had started to hurt there as well and sometimes up into my left ear. I made a dentist appointment, went through weeks of antibiotics and steroids and then was referred to an ENT who tried more steroids. I remember multiple professionals telling me “it’s highly unlikely to be anything serious, you have no risk factors”. I remember the ENT brushing me off but finally ordering a CT scan after about 2 weeks of no change. I remember I was in the bathroom at work when he called to tell me himself (never a good sign) that he was referring me to a surgical oncologist though he still doubted it was cancer. I remember meeting the oncologist and getting the biopsy and him telling me “we won’t know for sure until we have results, but I’m pretty sure you have cancer.” He spelled out the treatment and scheduled me for surgery saying “if it’s not cancer, then you come back and we high five and figure something else out!”

I remember exactly where I was when my phone rang and I recognized the surgeon’s number 2 days after my biopsy. I was charge nurse on the unit. It was a little before 9AM. I answered and made my way back to the break room. I wandered around the table during small talk with the surgeon, and then he hit me with “the results are back already, and you do have cancer.”

I sat there fairly numb, nodded and smiled as I continued to speak but I couldn’t tell you at all what we talked about. I hung up and told coworkers, and called my parents. I could almost hear my mom collapse internally. My dad was crying. I remained calm and consoled them. I’m a nurse, an empath…I’m the one used to being the healer. I couldn’t break out of that role. It didn’t seem real anyway.

I can’t tell you when I first broke down. There were many small breakdowns, most in the beginning having to do with how to tell my 6-year-old son, who was thankfully at his dad’s house that week so I had time to prepare. I went about my life, stopped working to focus on my family and friends and made sure I had everything ready for my fast-approaching surgery day.

Pre-op selfie

I had a pretty extensive surgery on the 27th of August. I was still joking and in a decent mood as I waited in my pre-op room. I sent a few texts, got my Versed cocktail around 8am after meeting with all the key players, and woke up around 9am the next morning, which to me felt like a blink.

During the initial 8-ish hour surgery, my surgical oncologist removed half of my tongue. He also took out 26 lymph nodes in the left side of my neck. Meanwhile, my reconstructive surgeon was busy taking a decent amount of tissue including nerve and my radial artery from my left arm. When the oncologist was done, the reconstructive surgeon used that harvested tissue to rebuild the half of my tongue that was missing. Also, because I’m a nurse and we are always cursed, I wound up losing venous flow in my tissue flap so apparently about 20 min after the first surgery was done, I was back in the OR for another few hours to fix a kinked vein.

Waking up the next morning was rough. I heard people calling my name and felt that I was still on the ventilator (i.e., life support, breathing machine). My arms were tethered to the bed so I couldn’t accidentally pull out anything important. I kept hearing people telling me to take a deep breath, but breathing felt funny not only because of the machine but because I was now breathing through a hole in my neck (tracheostomy). I hurt everywhere. I was confused. I didn’t know anyone and I couldn’t talk or write or make my needs known in any way those first few hours. It felt like days when finally I saw my first visitor, my manager from work. She told me I was still in PACU waiting for a bed on the surgical IMC and she wasn’t allowed to stay with me there but would see me again in my room. She said everything went well and I was breathing fine on my own and the surgeon thought he got all the cancer. I was relieved but still so incredibly anxious about getting to my room and healing.

Once in my room, my parents came in to see me. I was a swollen mess with tubes everywhere (4 drains, a wound vac, an arterial line, 2 IVs, an NG tube, and a Foley catheter), a bite block in my mouth that had to stay for at least 4 days, and an arm splint …but I managed to give them a thumbs up.

Finally in my room after over 24 hours in surgery and peri-op areas

I stayed in the hospital for 7 days. I dealt with a sore bottom (from laying flat on the surgical table and bed for so long), the joys of tube feeding, a trach that didn’t sit quite right and plugged on me one night causing a mini-party of nurses and doctors to run in, and had a full trach change right in my bed. I also had the trach removed right there. The first few days I couldn’t bathe myself or even wipe after using the restroom. I had to call for help for everything. I remember sitting half-naked in the bathroom, a nursing student gently bathing me with warm water and helping me get dressed. In that moment I felt incredibly humbled. So many times I had been on the other side, and now I knew how my patients felt. I was also incredibly grateful for the compassion and empathy most of the nurses and other team members had.

Little by little I got stronger and by the last day I was ready to GO. I met with a speech therapist who cleared me to eat pureed food and thin liquids. I met with a physical therapist to prove I could walk. And then I was on my own (with my parents and lots of tube feeding and wound dressing equipment).

Going home dealt a whole new level of obstacles I hadn’t thought of. Timing meals, getting places, showering, getting dressed, sleeping in a real bed, cats…but I was not even remotely prepared for the emotional tidal wave that would hit.

To be continued…

We’ll Start at the Beginning

“And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom.” – Anais Nin

Hi, I’m Stef! This is my first blog post, like, ever. I chose to start writing because I wanted to reach a larger audience with everything I’m going through…I’ve been told many times lately that I’m “an inspiration” and “strong” and, though I just believe I’m living as anyone else would, I DO want to help others so why not give this a shot?

On this blog you’ll find my life stories. Stories that are sad, happy, hilarious, triumphant, not-so-triumphant, and hopefully resonate somewhere with you to make you feel less alone in this crazy world. I’ve lived with depression and anxiety for years so you’ll read about that, and I’m currently going through treatment for newly diagnosed tongue cancer so you’ll probably read a lot about that, too. I may even sprinkle in a few stories from my career as a critical care nurse and single mom. Variety is the spice of life! The one common theme I want to drive home is despite everything, all the shit life throws at us, there is ALWAYS HOPE. So just sit back, enjoy your favorite beverage, and read along. We’ll get through this together.