Thank you, Mom.

I’m sure when you started to dream of the life we would have, you thought of a sweet little girl who would love tea parties and dolls and have girly nights together. You never imagined buying your daughter Ninja Turtles for Christmas and watching her build ramps to jump and beg to go fishing every Spring as soon as the weather warmed. But you supported and loved me, anyway.

When I dyed my hair purple and drove out of state to get my tongue pierced and listened to loud punk music and became the very definition of an angsty teen, you didn’t understand but you loved me anyway.

When I battled depression and anxiety and, in my own confusion and emotional storms, I declared I hated you and who knows what other hurtful things, I am sure you cried. But I know you cried more because you loved me so much and didn’t know what to do to help ease the pain I had inside.

When I called last August and told you my biopsy was positive, I’d never heard you sound so incredibly sad. You broke into tears immediately and the moment you saw me you wrapped me in your arms and told me “we are gonna get through this.” We. Because it’s never been just me battling anything alone.

You played chauffeur to girl scout meetings and trips, softball games, friends’ houses, and to and from the airport. You served on the PTA (something I know I’ll never be “mom” enough to do). You sat with me the day I, your former straight-A student, decided to drop out of high school senior year because my depression was so bad, and you were there when I went to night school to earn my final credits to graduate with my class.

Every heartbreak, every triumph, and every moment between, you’ve been there.

You were there for my bachelorette party and there for me through my divorce.

The first time I heard my own baby’s heartbeat, you were there with me.

Every night in the hospital after my 16-hour cancer surgery, you were there, sleeping on that tiny couch next to the window over top of the busiest ER in Baltimore. You were there when I couldn’t breathe and watched the team work to get my airway clear. I’m sure you were terrified but you never showed it. When I was scared, you held my hand.

You learned how to use Google Classrooms to teach Noah when I went back to work and schools shut down. You showed up to every single tee-ball game last season. I hope, when he’s a little older, we can sit on the back deck and teach him how to play Gin Rummy, like you taught me when I was younger.

You are amazing, Mom. It hasn’t been easy, but I hope you know the love you have for me and Noah shines bright and we appreciate you more than words could ever say.

I love you. Happy Mother’s Day. ❤️

Dear John

Death is a reality for all of us, but it’s an event that still causes a lot of suffering for those of us left behind. We grieve the loss, of course, but it’s also a very stark reminder that none of us knows what tomorrow will bring, or if we will even have a tomorrow. I feel like it feels even more heavy when the person we lose is young.

I met John in Germany 13 years ago, when I was 25 and he was 27. We had both signed up for the 10-day trip through our local community college. A group of us became friends as we travelled from Munich to Budapest, and we remained friends once we returned to the states. My first memory of John was when we were in Austria I think and I was having issues contacting my boyfriend back home. John walked with me to the T-Mobile payphones because he didn’t like the thought of a young woman going alone in a foreign city. That was how our friendship began and it was exactly how I will always remember that big, huggable teddy bear of a man.

The last five years or so is when we really became closer. We joined the same gym, we saw the Marvel movies together with our “nerd” friends, we went to Awesome Cons and local nerd parties and bar crawls, we did cosplay events, we discussed Game of Thrones, we watched Caps games. He came to my cookouts and I went to his. I still ha propane tank he brought to the last one because mine was low and he didnt want me to run out. He used to just stop by with random gifts because he found something I would like (usually a Funko Pop). When his mom was sick and ultimately died on the ICU where I work, I met her and saw where he got his big heart. After that he would stop by the hospital sometimes and buy me coffee, and if my friend Bridget was working he got her some too because she had been his mom’s primary nurse and he never forgot her.

When John started to become more and more sick and needed dialysis, he knew I was the tough love friend. When he became sick last Summer and needed ICU care I drove over an hour to visit and let him know I cared AND I was going to kick his ass if he didn’t get it together for his new fiance and her son. He was so goddamn stubborn. He told me on multiple occasions, “Stef, don’t worry, I’m too stubborn to die.”

The last time he told me that was about 2 months ago, when he was in the same ICU just across the hall from where his mother had died a few years prior. He had needed life support and almost died on us that weekend. I went up daily to see him and his fiance. When they lightened his sedation to wean him off the ventilator, he wrote “I’m sorry”. The man laying in the bed with the tube down his throat who narrowly avoided death was apologizing to me, to his friends and family. He vowed to do better. He cried, he told me how he had tried to get better, he was still trying. He asked me if I’d be a groomswoman in his wedding. He told me I was one of his best friends and I gave him the biggest hug. I’m pretty sure all of John’s friends were his best friends, he loved everyone so much.

Then yesterday, as I was hiking through a forest about a mile from my car, I saw his fiance’s name pop up on a call. I knew something had to be wrong. I answered. “Stef, I’m so sorry to tell you this over the phone. We lost John this morning.”

We lost him for sure. The world lost him. He went to bed Friday night and didn’t wake up Saturday morning, and the world got a little bit worse. He was, without a doubt, one of the most caring people I have ever met. He had so many struggles and so much of his own shit to wade through, but he always made sure his friends were ok. He always reached out. Maybe he cared too much about us and not enough about himself.

I’m having a hard time with this. I feel sad, obviously. But I’m also angry that we can’t have a proper funeral or memorial right now for this great man because of the pandemic. I’m sad for his fiance and her son, for his sister he cared for and his other sister who now has lost her brother and has to deal with all of the fallout that follows death, and I’m sad for his nephews. Most of all, the hardest feeling to reconcile right now, I’m feeling guilty. Did he know how much I loved him, too? Did he know how much good he brought into the world? Did he know how strong he was to do all he did while as sick as he was? I hope so badly he knew how much we loved him and how highly we thought of him.

If you’re still reading this, please tell your friends and family you love them. Don’t let this crazy social distancing cause you to be emotionally distant. Have fun, smile, and be grateful for the moments you have. Be kind and do something thoughtful for someone else. I think the world could be a little better if we step outside ourselves once in awhile and, like John, be supportive and caring to those around us.

John, you were the kindest, most caring man. I wish I had told you that more often. We had so many fun memories from the Game of Thrones bar night when we all got caught in the worst rain, to the Caps 2018 Stanley Cup playoff run parties (and the win), to photographing me almost falling into the Danube in Budapest. I will never, ever forget you and I hope I can somehow be as caring and thoughtful to my friends as you were to me and everyone else. ❤

John and I at a local cosplay event a few years ago.

Tonight I Heard Sirens

Sirens are always a stark, solemn reminder that life can change drastically in an instant. Every time I hear them I’m reminded of the morning I woke up to paramedics wheeling my Nana past the bedroom while my mother was crying on the phone. Nana never woke up. I remember the night a man rang our doorbell in the middle of the night because his car had left the road and hit a tree and my dad went out with a blanket I loved, and stayed with him until the ambulance arrived. I remember laying on the softball field, feeling my kneecap grossly out of place on the side of my leg. And the morning I ran out to my car while my son was in the house alone in his highchair and I felt both my ankles snap. All moments in time that altered my life or made me realize how quickly things can change.

My cancer diagnosis wasn’t one of those siren moments. Some people describe their diagnosis like life is very much divided right then and there. But for me, it felt more gray. Like there was a time that it just didn’t sink in. I wasn’t depressed, or anxious…I just didn’t fully grasp the totality of how serious it was and how incredibly different my life would become moving forward.

I think the instant for me came the day I came home from the hospital after my surgery. Reality hit SO HARD. Who am I now? How do I do these basic tasks? Constant pain and healing and holyshitwhatishappening?! The punching of the mirror…the mirror that showed me who I wasn’t anymore. That was my moment. Picking up those pieces of glass was just as much a literal job as it would become metaphorical over the following several months.

What instant changed you? Or instants? What made you realize life is so incredibly short? That the plans we so delicately and deliberately build can all fall to pieces without warning, leaving us lost and unsure of where to go next. What made you learn how to pick up those shattered pieces and move forward?

Or are you still standing there, wondering what happened to your beautiful mirror you had so perfectly constructed? Angrily shouting at no one in particular “why me?! Why now?! Why?!”

If there’s one thing this whole cancer thing has taught me, it’s that I can’t control what happens to me, but I can very much control how I respond. I could still be that woman holding broken glass and crying and being angry that this happened to me. And it’s fine that I was her for a bit, that I let her have her moment to acknowledge those feelings. But I’m glad I asked her to step aside so I could throw away that shattered glass and rebuild my image with self-love, joy, and compassion.

My ideal new life certainly didn’t involve a pandemic just as the warmer weather was approaching here. It didn’t involve learning to teach my son first grade via computer assignments at home or the inability to see friends and family. But it did include the idea that I can control my response to anything, and it’s the only thing in this entire life that I can control. So even when the circumstances make me feel overwhelmed or bitter or scared, I can choose to acknowledge those feelings and then release them in favor of feelings that serve to help me move forward. Life is so incredibly short and so amazingly precious. I want to live as much of it as possible feeling at peace and full of love, and I think that’s really the most any of us can hope for.

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.