Into the Unknown

If any of you are even remotely like me, you crave some sort of control in life. You long to believe that you have a say in how things go and your expectations will be met. If you experience a situation where you feel like you have little or no control, your anxiety kicks in and you freak out, even just a little bit. Or you become angry and blame anything and everything around you for your mood.

This is a natural response. We are hardwired to want to survive, and to survive we want to be in control and not experience pain or suffering. It makes sense, but wreaks havoc on our relationships and paradoxically causes more pain and suffering in the form of anxiety.

When I was diagnosed with cancer, I didn’t feel much different; everything went by in a blur throughout treatment. Then suddenly, I’m healing 3 months out and ready to start my “new normal” and I realize I don’t know who I am anymore. I completely lost my sense of self.

Many of us build much of our sense of identity from our careers and the most frequent roles we play. Before cancer I was a critical care nurse and a mom mostly. Those two things defined me. But when I was going through treatment I couldn’t be a mom most of the time (in my own definition) and I still lack the energy now to be as great a mom as I want to be. I’m still out of work and won’t be able to return to the bedside where I spent almost a decade caring for critically ill patients and their loved ones. Bedside nursing probably defined me even more than being a mom. I spent years in school and built hundreds of relationships with fellow nurses, doctors, techs, RTs, etc as well as patients and their families. I’ve been a nurse longer than I’ve been a mom.

“You can only lose what you cling to.”

-Buddha

So recently I started studying different thoughts from Buddhism on attachment, compassion, and acceptance. I’ve learned that I’m pretty good in the compassion department, UNTIL I become attached to an idea, a person, an emotion…anything. I also suffer when I try to challenge something instead of accepting it. It seems like I’d have to give up all my own ideas to follow this way of thinking, right? Actually, no.

In Buddhist thought, letting go of attachments means we have more freedom to fully love and feel true joy. It doesn’t mean we don’t care about others or form bonds. It means those relationships and bonds don’t control our emotions. In practicing acceptance, we just allow ourselves to be present. When we form expectations, we set ourselves up for disappointment. That doesn’t mean we should let people harm us or stay in bad situations, but from an emotional standpoint accept that it happened, deal with it appropriately (such as pressing charges on an abusive partner), and continue to live.

In my situation, I’ve come to realize I need to accept that my life is what it is now. There is no point in mourning the past, it will never come back. I can learn from the past though, and use lessons from it to apply to my present life. I try daily now to accept the hardships that come my way and also realize they won’t last…nothing is permanent.

Impermanence can be a scary topic. It forces us to admit none of us will be here forever. However, that makes it even more important to be grateful for every moment. Even the bad moments have lessons in them if we’re willing to find them.

Now, I’m becoming grateful for this last 8 months of trials I never dreamed of facing. I’m becoming more fully who I am meant to be. My soul is shining brighter than ever and I’m content more often than not, even when I’m in pain or tired. I’ve accepted this is my life, I’m letting go of perceived control on outside factors and focusing on controlling my reactions to things, and I’m practicing self compassion more, as well as developing even stronger empathy for others…including those who don’t share the same beliefs or ideas as me.

To sum it all up, life will keep going, with or without me. It’s time I learn to let go and just enjoy the ride as much as possible, and help as many people as I can to do the same along the way.

Broken.

You want the truth? You wanna know how I’ve been feeling and what’s been happening since treatment ended? Ok. But you HAVE to promise me you won’t tell me “it will be ok” or “just be positive”. Because I’ve heard those things. And right now it’s NOT ok. Will it be eventually? Probably. But right now it’s not so please if you want to do anything at all, just be present and support me.

I thought the worst was over when my mucositis went away and I could start eating again. No more radiation. Less appointments. Yay! But I was so, so wrong.

Turns out, I’ve been harboring all of this fear and depression and guilt and anger and anxiety and I never really let it out during treatment because I was too sick to care (and on a MASSIVE amount of pain meds). And this week it decided to really just explode on me.

I’ve been generally more depressed for awhile because Winter (see previous post). But the last week or so has been rough in other ways. My friend was on life support and seeing him get suctioned triggered a panic attack in me. Had no idea that would happen. Then, I found out a woman I have followed on Instagram since my diagnosis has just gone on hopsice for her terminal cancer. She’s younger than me. Add to that my first PET scan was this week and I’ve been having new not fun symptoms I assume are a byproduct of radiation and I’m legit poor and need to figure out what a broken nurse can do for work… and here I am, having a complete meltdown today.

*Waves white flag* I give up. I broke. You win, universe. I thought I could be strong and had become this super woman with positive yet realistic outlooks and I could face it all with a smile. But I am broken. I need help to get back up and be me again. Or new me. Or whoever the hell I’m supposed to be now. Just not this woman. I can’t continue like this. I don’t want to be sad and angry and bitter and anxious every waking moment. I just want to go back to being happy.

Hijacked

Every year, Winter is the hardest season for me to get through. Depression settles itself right in and takes the wheel and I become an unwilling yet taciturn passenger. But this year I’m struggling even harder to find the willpower to take back the wheel and drive. Because this year Depression has new weapons: cancer and side effects from treatment. Zoloft ain’t got nothin on those bad boys! So bear with me, I’m just going to get a bunch of stuff off my chest.

I’m angry at my body for betraying me. I’m angry at radiation for making everything so much worse than it was (even though I understand why it was needed). I’m frustrated with the side effects like muscle tightness and lack of saliva. I’m jealous of people who can eat and drink and speak normally, who don’t wake up 4-5 times every night to their tongue sticking to the roof of their mouth, who don’t need to carry water with them everywhere they go. I want to be able to see a recipe and try it without wondering if I can chew/swallow it or if it will even taste right to me. I miss cooking. I’m frustrated that it takes me about an hour to eat small amounts of food and that I can’t seem to find many healthy foods I can both afford and eat without an issue. I’m scared I won’t find a job and I’m running out of money quickly. If I lose my disability I lose my benefits for myself and my son. I don’t want to be on long-term disability, I want to work and have that part of my identity back, but I’m in no shape to work at the bedside anymore so trying to find a new career path is difficult. There are so many bills to pay and people to keep informed about disability and work absence and appointments to make and I’m totally overwhelmed by it all right now. When I get overwhelmed I tend to retreat into myself and do puzzles/games all day because I can focus my brain on something and that is soothing to me. So…I haven’t made some appointments and my house is a mess and I am just barely treading water right now. I one hundred percent admit I’m struggling.

*deep breath*

I KNOW I’ll get past this. I know I’ll have better days when the weather improves and I can just get outside and it will motivate me to be better and do better again. But right now I’m so tired of fighting it. Trying to stay positive all the time is EXHAUSTING. I want to just lay here and let someone else do the fighting and the worrying and the tasks I’ve left undone for too long. I want to go to sleep and wake up when this is better. But it won’t GET better without my effort. And that’s the crux of it all. How do I force myself to get up and get better when I’m exhausted from constantly trying to get up and get better? (This is a rhetorical question, PLEASE don’t send me advice. I don’t want it, I only wanted to write this to give an idea of how I feel.)

I’m just ready for Spring. I want kick Depression out of the driver’s seat and cruise with the windows down and sun shining on me. I also hope for a renewal of my body somehow, that maybe my own Spring will bring new taste buds and a flow of saliva and the energy to keep up with everything I’ve been neglecting, but I’ll settle for the mental fortitude to better accept “the new me.”

Thanks to all my friends and family who stick by my side even when I’m despondent and difficult to really reach. I promise happy-go-lucky, positive Stef is still here, she’s just overwhelmed and exhausted and trying to gather the strength to take back the wheel.

Dear Cancer…

Things have been steadily getting better for me for the most part. My sores are slowly healing and I’m able to eat slightly more. My taste is back so food is a little more appealing, though it still takes forever to eat. I won’t know until sometime in January or February if I’m free of disease, but for now I’m going to hope and believe I am. I’m grateful I’ve come as far as I have as quickly as I have, but I’m still insanely depressed some days and I’m also angry. I think that allowing myself to feel the anger and loss could help me move forward. So today, I’m writing a letter to cancer.

Dear cancer,

Actually, scratch the “dear”, because you are nowhere near deserving of that respect. Cancer, you have shown up uninvited to many, many lives. Each time you plant your ugly roots in one person, you actually affect everyone who cares for that person as well. You create fear, chaos, anxiety, pain, depression, and feelings of helplessness. You steal happy times and throw us into this pit of despair where we try desperately to stay afloat with what little energy we have left after you’ve ravaged our bodies and our minds. You take kids out of school in the most important years of their lives. You rip grandparents out of children’s arms and parents from their babies and babies from their parents. You do not discriminate at all. Any age, race, religion, or sex will suit you just fine to destroy.

Personally, last Summer was going amazingly well for me. I was finding myself and having a blast with my son and my friends and moving forward doing great things in my career. Everything seemed to be wonderful…until I discovered you. You had many doctors fooled because I was young and healthy. But we got you. My surgeons carefully cut you out and took almost half my tongue with you…you had grown so large so fast! You had already reached deeper inside and gotten into a lymph node. So the surgeons took about 26 of them from me. Do you know how hard it is to heal when you’re missing that many lymph nodes? The swelling was awful. I spent a week in the hospital following that first surgery. Feeding tube up my nose. Tracheostomy to help me breathe. 4 drains. A wound vac. IVs. But you know what? That first day when I woke up from over 24 hours of anesthesia, after they took me off the ventilator and I went to my room, and I was so incredibly scared but happy to be alive…you know what I did? I took a picture, and I put my thumb up, and I tried to smile through the bite block and the massive swelling…because fuck you.

And I healed quickly from surgery. I went to my second surgery like it was simple (because what’s a skin graft compared to massive microvascular and reconstructive surgery?) despite needing an awake nasal intubation and that not being remotely pleasant. Then the pain from that healing, oh man. I wasn’t prepared for that but it went away fairly quickly. And I continued to be brave and strong and heal. And when I went to the dentist and learned I needed 2 wisdom teeth pulled THAT day because of radiation, I stayed calm. And when radiation finally started I was pretty good for about 2 weeks. Then the real fight started. I lost so much weight and became so weak, but I’m still here.

I can only imagine how it feels to be shriveled up and killed by an invisible beam. Whatever was left of you was hopefully obliterated in the 30 times that beam carved through my cells. My healthy cells will mostly return, and I’ll slowly heal from that hell. But you won’t. You are dead to me. With each day I grow stronger and you are just a memory now. A painful reminder of the fragility of life and that nothing is ever promised.

I’ll never forget you, cancer. I will always be reminded by the scars and the way I talk now and how I eat (or can’t eat). I’ll try and try but I’ll always be wary of your return to my body. I’ll always feel even the smallest amount of anxiety when something just doesn’t seem right. I’ll watch over my family like a hawk and make them check into any minor ailment with the intensity of a mama bear because I never, ever want them to know how it feels to know you like I did.

So again, with the most sincere tone, fuck you. I am alive. I am a survivor despite your attempt to kill me. I am physically and mentally scarred and forever changed but I am here. I am rebuilding and will someday soon be the best version of myself because I choose to be so much better than you. I will not let you ruin the life I worked so hard to keep you from stealing. And there are many, many more like me out there. Someday, you will be a distant memory to us all and we will keep on living.

Sincerely,

Stef

Sometime during the weeks of radiation hell I was gifted this awesome hat.

Thank you.

Thanksgiving is one of those holidays where you can be sure you’ll scroll through your social media platform of choice to find lots of inspirational quotes on pretty backgrounds and a million people thankful for pretty much the same things over and over, which happen to also be things I think most of us take for granted (friends, family, a home, children, health, etc.). And this year it all seemed a bit less genuine than it had before. Why are we only thankful for the things we seem to take for granted?

Now don’t get me wrong, I’m very grateful for wonderful friends and an amazing family; I could list pages of reasons why I’m glad they’re in my life. And of course I’m happy to have a decent home and slightly less decent (but not horrible) health. I think it’s wonderful to realize what and who we really cherish, but I think we miss the mark when we just say we are thankful for them and don’t realize why…in that way we are still sort of just taking them for granted. So no, I’m not thankful for my parents; I’m thankful that I’m fortunate enough to have two living parents who are close by and who are able and willing to help me when I’m struggling. This line of thinking made me contemplate what I’m actually thankful for, not just the things I take for granted.

This year I’ve realized I’m actually most thankful for the not-so-great stuff that you won’t find on any Hallmark cards, because these are the things that have truly changed me and allowed me to grow and better myself. These are the rainy days that allow me to appreciate the sun more…and even find the beauty in the rain itself.

I’m thankful I no longer see life as a burden, and I now realize it’s fleeting for all of us whether we’re here for 8 or 108 years. I have spent so much time in the last 37 years wishing for time to speed up, when in reality I just wanted to get past the bad moments quicker. However, I now know the suffering serves it’s purpose, too. Now instead of being miserable through bad times, wishing they would end, my goal is to look for the lesson(s) in them and be thankful I have been given the time I have. As for the good times, I try to cherish those but also remember they won’t last forever either and that’s ok. Every moment I’m given to live this life is a gift and I’m thankful for it.

I’m thankful for the people who were honest with me and told me when I was toxic, and for those who still keep it real with me (in a kind manner) when I slip up. None of us likes to hear we have bad traits, despite all of us knowing we’re not perfect. The hard truth is, though, that until we accept responsibility for our flawed behavior, we will never grow. Like many people, for years when someone told me I was too negative or I was overreacting or had a short fuse I just pushed back with excuses and tried to point out their flaws. It’s difficult to look back and realize you’ve hurt people you love because you were too selfish to accept it. One day, I started actually taking criticisms seriously, examining them to see if they had any real clout and I was devastated and ashamed to realize I was in fact the one who was wrong all along. However, instead of feeling sorry for myself and playing the victim to my own “crimes”, I used the information to grow and change my behavior. I know I can’t change the past but I’m damn proud of the woman who has grown from that rubble, and without the people who were honest with me I may have never realized how toxic my behavior really was.

I’m thankful for losing (and then getting back in touch with) my spiritual self. I’ve never been religious, but always remained open to the ideas of different religions and spiritual paths. Then, for some reason I shifted and started to identify as an atheist. My whole outlook on life became very bleak and I was horribly cynical. However, as a nurse in the critical care environment, I experience many things that can’t be explained by science alone and between those experiences and my reintroduction to Buddhism, I regained my true spiritual self and actually felt stronger than ever spirtually. Had I never lost sight of it, I may have never fully appreciated the impact it has in my life. (**I’m not saying it’s bad to be an atheist, it was just bad for me because of my personality**)

Finally, I’m thankful for the times I hit rock bottom. I have experienced the worst days of my life thus far…and survived them all. I know what I’m capable of enduring, and likely could endure worse (although I hope I never have to). I believe had I not had some pretty rough experiences earlier in my life, the cancer diagnosis and treatment probably would have wrecked me. Instead, I was able to stay strong because I’d been through the worst before and I already carried some of the tools I needed to keep me going. Each time I hit that bottom level I know I can survive it and I know it won’t last forever.

I suppose this entire piece could be summed up by saying I’m thankful for my suffering. Without suffering, I wouldn’t know how strong I am. Without suffering, I wouldn’t be able to fully appreciate happiness. There is no light without the darkness, and once we realize that both are equally important to our growth we can begin to appreciate suffering for what it is and what it gives us.

New Me, Who Dis?

I haven’t posted in awhile, mostly because it’s been the same boring, hellish routine of daily radiation for weeks. I have 7 treatments left and then I get to hunker down and heal, hopefully in time to actually be able to eat and enjoy some sort of food by Christmas.

Right now, in this moment, I want to give up. I’ve given everything and I’m now exhausted. I’m having a day where I can’t eat or drink without pain or super thick gross secretions gagging me. Nothing tastes like it should and I usually have this awful bitter taste in my mouth. Do you know how maddening it is to crave food you physically can’t have, and if you can it tastes awful? Most days are spent in a haze of pain killers and sleeping or attempting to get any drop of nutrition. I’ve lost about 20 lbs since I had surgery, most of which hit after radiation hell started. I’ve had to get IV fluids for dehydration and I’ve tried all sorts of supplements and extras. I feel absolutely done, over it, at my limit.

But truth be told, I’m sort of scared that treatment is ending. Daily scans, a weekly check-in with a doctor and nurse…done. I’ll be left to my own devices and a horrible propensity to Google symptoms. Don’t get me wrong, I’m MORE than happy to end this hell, but I’ll miss that security blanket. And, to be honest, I have no idea who I am without constant cancer appointments and tests and whatnot. I’m sort of afraid to assimilate myself back into “normal life”. I imagine it’s sort of how a prisoner feels going back to life outside of prison. People who haven’t been don’t understand the difficulty in navigating new routines, new habits, not having most of your time planned out for you by the people in charge of your life.

This is where my journey in finding the “new me” will begin. Who am I on the other side of this mess? What will I become? Can I build my strength back up and become healthier now? Do I sort of get a blank slate to work on things I put off before? Will I still have the support I need when the beams are off and the outward scars are healed but the emotional wounds are still fresh and stinging?

So many people who have never had to deal with cancer (pre-cancer me included) don’t understand that when treatment ends, it doesn’t mean we go back to “normal”. God-willing, in January I’ll have a No Evidence of Disease (NED) report, but many think that means “cured”. The sobering reality is I’ll live the rest of my life with scans and tests and anxiety about the cancer coming back or a new one forming, because there is no “cure”. I’ll do my best to not let it bother me, of course, but I can’t ignore it. It’s a part of me now.

I also feel a sort of “them and us” vibe between cancer survivors and those who haven’t had the disease. I don’t feel like there’s a competition, but that there’s just always this thing that my cancer friends will understand and my non-cancer friends won’t. It makes me a little bit sad. It almost feels like I’ve been to the edge of the earth and peered over, and I cant share that feeling with anyone unless they’ve seen it, too.

I’m worried that the expectation (from myself and others) will be for me to “bounce back” like none of this happened; like the last 4 months of pain, surgeries, more pain, radiation, worse pain, malnutrition, dehydration, body changes, and learning to talk and eat again can just be quickly pocketed away in some secret vault. I’m worried non-cancer people won’t understand if/when I have setbacks despite being out of treatment.

I know, eventually, all of these fears will subside and I’ll hopefully get to a new normal. I’ll never be the same person I was before cancer. I’ll hopefully be a stronger, more gracious, patient, and resilient person. But in the meantime, please pardon all the tears and delays while I try to construct the new me.

Totally Rad…iated

Actually, I think the correct word is irradiated in this case but whatever. I officially started radiation therapy last week! I’ll be driving (or riding) about an hour each way Monday through Friday until November 19th to have a linear accelerator shoot me with a super high dose of photons. It looks as sci-fi as it sounds. In fact, despite almost a decade working in critical care as a nurse, I’ve never been more amazed at our medical knowledge and technology than through this cancer process. I mean, they took out half my tongue and rebuilt it with my forearm…and avoided major vessel or nerve damage in my neck while doing so.

Anyway, back to radiation. A few people have asked me about the experience so I’ll try to describe it as best as possible. My specific type of therapy is called VMAT which stands for Volumetric-Modulated Arc Therapy. Basically a linear accelerator rotates a beam of radiation around my head and neck for about 3 minutes. There’s no pain or any sensation really other than hearing the machine. Sounds easy peasy right?

The Mask. Not as fun as the movie.

In order for the beam to hit just the intended targets and spare my healthy tissue as much as possible, I have to wear this mask each time I go in (it has marks for the team to see where we want the beam to hit). It was molded specifically to my face a few weeks ago and actually clips to the table so I can’t move AT ALL. I don’t even have room to open my eyes if I want. Also, the thing in the middle sticking out of my mouth is what I refer to as a popsicle when I use them on my intubated patients in critical care. It’s a firm wedge that I stick in my mouth to hold my tongue in place and away from the roof of my mouth. So I can’t talk, either. Oh, and that 3 minute treatment time is just the time the actual radiation is on. About 10-15 minutes before that I’m still in the mask getting repositioned a few centimeters by the radiation techs pulling a sheet under my body. Each time we take an X-ray to see if I’m lined up just right. Again, the measurements are very precise to avoid damaging healthy tissue as much as possible. Also, once a week I have a CT scan to check everything out right before the beam comes on.

Unfortunately, the worst part of this therapy is the side effects which are cumulative. There’s no way to tell how bad they’ll be and each person responds differently, but universally we experience loss of saliva, loss of taste, painful mouth/tongue/throat sores, hair loss (where the beam hits), fatigue, and skin burns. I’ve also been “lucky” enough to experience some nausea and early swelling causing ear pain in my treatment thus far. Because the effects are cumulative, I know it will only get worse from here. However, most will start to improve once treatment ends with the exception of dry mouth. Other problems can crop up later, such as stiff muscles, esophageal strictures, bone loss/death, lymphedema, dental issues, and thyroid deficiency (in fact I’ll have to get my thyroid levels checked every few months now and visit the dentist 4 times a year).

Most of the side effects ARE manageable with daily treatments like mouth rinses, medications, stretching, etc. but it’s no easy task, and manageable certainly doesn’t equal pleasant. My anxiety is at an all time high and my productivity is at an all time low partly due to feeling drained (it’s hard work for the body to repair from radiation) and partly due to just being over this whole situation.

If you know someone going through this process, please cut them some slack. They’re likely feeling many emotions but trying to be as “normal” as possible. I believe most people, like me, greatly enjoy food, so to lose the ability to taste or swallow it is pretty devastating. On top of that, they’re tired and in pain and have to make a trip however far EVERY DAY to have this procedure even though they know it makes them feel awful. So be kind. Offer a smoothie or milkshake or a ride to the treatment center. And just listen if they want to vent. Trust me, they’ll appreciate it.

Guilty Until Proven Innocent

When you become a parent no one tells you about the immense amount of guilt involved. You hear about the love, the sleepless nights, the worry (which is sort of related), the pride…but the guilt isn’t talked about.

The guilt starts early, before the baby is even born (especially if you’re the mom carrying the baby). Did you just eat that?! That could harm the baby! Omg you thought about having a glass of wine? Are you NUTS? Sex while pregnant? You just damaged your fetus’s delicate psyche somehow. You’ll regret that C-section forever, should have had a natural birth.

And after the baby is born and in your care 24/7?! Ooooh boy. That’s when the real fun starts! Breast vs bottle, circumcision or not, cosleeping, when to start what foods, what diapers you use and if they’re not cloth you’re killing the earth, medicine or not, when should you call the doctor…why didn’t you call them sooner?! On and on and on you second guess EVERY decision and regardless of how it turns out, you feel guilty about it somehow at some point. And in the age of social media, it’s an all out war on who can be the best parent and basically article after article (or message board post) how you’re failing miserably. Clearly you shouldn’t even BE a parent…what the hell were you thinking?! You’re ruining a perfectly good human by trying your best.

When my son was about 10 months old, I made up my mind to seek a divorce after months of soul searching and trying to make things work. I had been married just over 2 years and we had been together for almost 7. I had always envisioned that “perfect life” with a nice house, a kid or two, a husband, living happily ever after. Divorce was never something I planned on (like it ever is) and being a single mom was definitely not on my bucket list. The guilt I felt for doing what I felt was the right decision for me (and therefore ultimately my son) was soul-crushing. The words from his father assuring me it would be completely my fault for “ruining our son’s life” made it even worse, as did the stinging questions from well-meaning family and friends asking if I thought about how it would affect my son…as if he wasn’t on the forefront of every decision I made the last year and a half since I knew he existed inside of me. I shrank inside myself with the weight of the guilt, but I continued with my decision believing it was what was best (and I still whole-heartedly believe it).

Rewind for a sec and I realize that for my entire life leading up to that pivotal moment I had made big decisions based on everyone but me. I was a bystander in my own life letting others dictate it for me because I had no sense of who I truly was, no self-compassion, or trust. Ultimately, it caught up to me. I dated some people based on how I thought it would make others feel (like if my parents would like them), or because I didn’t want the other person to feel bad if I turned them down. And who was I to turn anyone down?? I thought I should take whatever I could get. Unfortunately the idea that I wasn’t good enough had been reinforced by many people over many years and I believed it. But finally, albeit at a very inopportune time in my life, I broke free of that cycle and realized that if I wanted the most important person in my life to grow up happy and healthy, I needed to look after and love myself first in order to teach him the same.

It’s been rocky learning to love myself. I’m writing this post today because I am overwhelmed with feeling guilty about missing out on time with my son. In the last month, I haven’t been as present as I would like due to surgeries, healing, treatments, and appointments. His dad has had him at his house full time (we usually split custody 50/50 and trade every other week). I’ve had a few overnights and days with him, but I feel like I’ve missed so much. He lost a tooth this weekend and forgot to tell me until I saw him. He started first grade a month ago and I didn’t even know schools were closed today and tomorrow. I haven’t met his teacher. I haven’t packed his lunch or given him a bath or made him dinner more than 3 times in the last month. I feel like a really close family friend, completely out of the loop of my own son’s life, and the guilt is killing me. I feel like a complete failure as a mother because I’m not there like I feel I should be.

I know I had no control over this disease happening to me; I didn’t wake up one day and stretch and say “welp, feels like a good day for cancer!” I know that I’m doing the best I can for myself so both of us have the benefit of my life being as long and healthy as possible. And I know kids are resilient and learn well when we’re willing to teach them (and I’m all about teachable moments). But this time the guilt is dragging me down like a rock tied to my ankle in the middle of a lake and I’m not quite sure how to let that weight go right now.

How Punk Rock Saved my Life

When I was in high school, around age 17, I was hit hard with depression and anxiety. I dropped out my senior year and began cutting just to dull the mental pain. Fortunately for me, I started a regimen of therapy and medication that, although not right for me yet, got me to graduate high school with my peers. I continued to struggle for years, winding up in the ER and even an inpatient psychiatric hospital at one point. Somehow, through it all, I survived when some of my friends did not.

During the same time that my mental illness appeared, I was getting into the punk scene. Plaid pants, Doc Marten boots, chains, purple hair…the whole nine. My parents were less than thrilled, but I believe this is what ultimately saved my life and started me on the path to be a better human in general. I fell in mostly with the straight edge crowd, never went to big parties or drank or smoked (and I was a straight-A student before mental illness made me miss more days than I attended and quit trying). I started listening to bands like Bad Religion and fell in love with Greg Graffin’s use of words I didn’t know…so I would look up the lyrics and grab a dictionary (we didn’t have pocket computers back then). I fell in love with the anti-authoratative messages of Pennywise songs, the dark beauty of AFI and Tiger Army spoke to me on an artistic level, and then I discovered a band called H2O.

H2O was a hardcore punk band from New York, but they were different in that the songs were understandable (i.e. not screaming) and the lyrics were all about PMA (positive mental attitude) and just being a good person. One day, the message finally clicked and I knew I wanted to do better, to be better. And that’s when I got my forearm tattoos. I had already gotten the ankh on my left forearm to represent life (the same arm I would cut in high school) and remind myself that I cherished being alive. So to match, I got the scarab on the right arm, which is a symbol of good luck and prosperity, and then added the words from one of my favorite songs: One Life, One Chance.

Backwards here, but the “one life” tattoo was on my left arm and the “one chance” on my right.

Of all my tattoos (not that I have many), I am most proud of these because they mean so much to me. They represent an internal struggle and the resilience to continue to overcome and grow. So when I was diagnosed with tongue cancer and found out I’d be losing my left forearm to rebuild the part of my tongue they had to remove, I was actually pretty upset (even though it’s kinda badass that I now have a tattoo on my tongue). But I also haven’t missed the irony (or perhaps serendipity) in the fact that the “one life” ankh is now in the very place that on my body that tried to kill me.

“No one said it was gonna be easy and I’m not afraid to try. With the odds stacked up against me I will have to fight: one life, one chance, gotta do it right.”

“One Life, One Chance” by H2O

I have also realized on this journey that had things not happened as they did, with the mental illness and then a divorce, single motherhood, and other minor health issues, I don’t think I would have been able to be as strong as I’ve been in this current battle with cancer. All of the experiences I’ve had have helped me grow my resilience and seek ways of living that bring me peace rather than suffering. I still have moments of suffering, obviously, but I know how strong I really am and can look back and see how far I’ve come. In that way, I’m grateful for the struggles, the heartache, and the lessons I’ve learned. I’m fortunate that at a very pivotal time in my life I was introduced to a scene that helped me believe in myself and want to be a better person. Punk rock most definitely saved, and continues to save, my life. 🤘

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 realellybrown.com. 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 myoralcancersupport.com.