I saw a post today about mental health and cancer survivors and realized yesterday was Mental Health Awareness Day. If you’ve spent any time at all reading my posts you have probably realized that mental health is a cause as near and dear to my heart as cancer. Since my treatment ended, I’ve been working hard to try to figure out how to improve the long-term physical side effects associated with it, as well as the mental ones.
You see cancer, whether “cured”/NED/in remission or not, is a chronic illness. It changes people deep below the visible scars and noticeable physical disabilities. I’d go as far as to argue that its mentally harder to handle cancer after treatment ends.
During treatment, it’s all a blur. It’s hard physically but mentally we don’t even have a chance to really comprehend what’s happening. Once treatment ends (for those of us fortunate enough to have that happen), it’s like sitting in a dark alley alone after being jumped and trying to figure out what the hell just happened…grateful to be alive but also completely overwhelmed with trying to sort it all out and get back on our feet. It’s a process, and it’s difficult and messy and scary and frustrating. Many survivors end up with PTSD, survivors guilt, depression, and/or anxiety.
That being said, I also talk a lot about being grateful in a way for my cancer experience because it has made me stronger emotionally. This is absolutely still true. But how?? Well, we can be thankful for the rain because it helps things grow, and also be sad that it ruined our plans for the beach. It is possible (and common) to feel contradictory emotions at the same time about the same thing.
I think one of the ways we can start to really heal, and help one another, is to accept and embrace that life isn’t black or white, good or bad, happy or sad. We don’t have to choose just one. Life is happy and depressing and joyous and stressful and scary and amazing all at once! And so are we.
Mental health matters, not just for cancer survivors but for everyone, and it’s ok to admit we are both struggling and succeeding. It’s ok to be proud and frustrated. It’s ok to accept and have compassion for others who have different struggles and still deserve that same compassion for our own.
I think it’s time we all stop forcing the division of or and start embracing the power of and.
The first thing people ask me when they find out I had cancer is always something along the lines of “are you better, now?” Generally I answer “yup, two scans show no evidence of disease!” because that’s the easy answer, the answer people want to hear when they make polite conversation and just want to be reassured they’re not standing next to someone who has the Grim Reaper on speed dial.
But here, I can be honest. Here I can give you the real answer. The whole truth:
Am I better? That’s a loaded question. As far as the cancer cells, yes, it appears for now that they have been obliterated. Scans every few months show that there is no new cancer growth and the old is gone. But I celebrate that fact cautiously because I know it can come back at any time. I’m at highest risk for a recurrence in the first two years, but the risk is never zero and always higher than someone who has never had cancer or radiation.
Am I better physically? Well… I’m better than I was immediately post-op and immediately post-radiation for sure. I’ve gained back all the weight I lost when I was literally starving during and just after radiation. My blood levels have normalized and my body is almost back to functioning normally. . . except the lack of saliva, a fried thyroid that doesn’t work right anymore, having half of a normal tongue that has ridiculous neuropathy and taste changes that I can’t keep up with, chronic neck/jaw pain, weird nerve side effects from radiation, and permanent numbness and massive scarring on my donor arm. . .to name a few cancer-related changes.
Am I better mentally and emotionally? Hell no. I’m doing my best to stay positive but with career loss, a pandemic, astronomical daycare and medical bills on top of the cancer stuff, I’m losing ground on this front daily. Truth is, I’m more depressed now than I have been in YEARS. Decades, even. I cry almost every day, sometimes multiple times a day. I have been irritable and withdrawn and completely not myself. I want to sleep all day. I don’t want to do anything at all. I want to be numb because when I’m numb (or ignoring the issues) then I can’t feel the cracks forming my inevitable breakdown that I know is coming.
So, am I better? No, I’m not. I’ll never be physically the same as I was before cancer, and I still have a lot of emotional baggage to unpack and sort. I imagine that when the other major stressors let up I’ll be much more inclined to say I’m doing well, but I’ll never be better. To me, the phrase “I’m better” means I’ve completely overcome something, that it’s no longer a part of me. This disease and it’s treatment have changed me in both good and bad ways, and it will always be part of who I am.
August 7th marked one year from the phonecall that started the most life-altering time period of my life thus far.
One year of fear, tears, anger, depression, helplessness, jealousy, and pain. But also one year of growth, resilience, strength, learning, and hope. A year of obstacles and a year of climbing over them no matter how hard. A year of wanting to give up but persevering. A year of discovering who I really am under the emotions, the ego, the protective walls my brain has constructed to keep me “safe.” A year of dying, and a year of becoming.
This year has taught me there are two sides to every story. We can choose to focus on the negative and allow it to consume us, or we can search for the positive and strive to follow it. We can have a million things going well and allow one negative to completely destroy us. The choice of where to focus our energy is ALWAYS ours, even when it feels impossible.
None of us can control what happens, no matter how much we try (that’s the hardest lesson of all for me), but we can always choose how we respond. Even a story rife with tragedy and loss can have a happy ending.
I know you don’t understand. You don’t know how to control those big emotions swirling around in your brain, making your body feel sick and shaky and your tiny heart pound. You are doing the best you can with what you know. It will get easier, I promise.
Some day, you’ll realize that you are enough. You are more than enough. Every mistake and every victory create the story of you. Every blemish and scar, every award and accolade. All worth it, all worthy, all you.
You are a passionate spitfire with a heart of gold. You learn the hard way sometimes, but you always learn because you never give up. You can sometimes be obstinate…but don’t fret. You will learn to open your mind and your heart and use that stubborn nature for good!
You will face ugly demons. You will wield the sword and slay them on your own, alone in the arena while your loved ones cheer from the seats (because these fights are yours to win). You’re the heroine in your own story. You’re so strong, child. So smart and so strong.
I know right now you don’t feel like enough. You feel like you need praise from others, you tentatively ask if everything is ok, if you’re doing the right things, but what you really mean is “Am I worthy of your love?”
Yes, child. Even when you feel totally alone, remember that the universe itself has always been inside of you, and always will be. You are an incredible being! Millions and millions of infinitesimal parts, choreographing a continuous dance that is just like but wholly different than anything else on this earth.
One day you will understand how much power you hold, and how to harness it. You will find your voice, and you will turn every ounce of angst and anger and sadness and shame into a song that others can’t help but to dance along to.
You will meet many amazing people. Some will stick by you for years, some will be there for just a little while. You will suffer great losses, but you will learn to be grateful for the time you had. You will learn to accept that nothing lasts forever.
You will also meet people who hurt you. Some inadvertently as they learn the same lessons, and some because they just hold evil in their hearts. You will want to hate them, but the rage you feel will harm you more than it does them. Eventually you will learn forgiveness and you will let them, and the pain, go.
It’s ok to cry, little one. Let it out like the clouds release the rain when it just gets too heavy to carry. It’s ok to feel angry and release that negative energy sometimes like the storms that roll across the Summer sky. And it’s ok to let yourself be happy, to smile. Let yourself be silly and enjoy the little moments and don’t worry what others think or say. Not everyone will like you, and not everyone will understand you and the way you live, but that isn’t your cross to bear.
It’s ok, child. It will all be ok. You can rest. We know how this story ends because we are the author, and we hold the pen. The power was inside us all along.
There’s this woman, who by all accounts seems successful, loving, kind, optimistic…all those good things. But she has a secret.
She doesn’t believe any of it most of the time.
Oh, by the way, she’s me.
I know, I write and talk a lot about being positive and all, but living it is a different story. However, part of the work is being honest and accepting who I am, so here it is.
I am insecure. Like, super insecure. Nine times out of ten I hate how I look. One part of my body or another seems off, or gross, or I hate how I walk or talk. I am CONSTANTLY afraid that other people are judging me. This, in turn, creates horrible anxiety. For some reason I have this thought that EVERYONE is always watching me and judging me. Do I think I’m really that important? That the world is watching and judging my every move? No. But I don’t know how to turn it off.
For instance, last night I really wanted some egg rolls, sweet and sour cabbage, and fried rice. I spent AN HOUR looking for a way to order without needing 1. To call anyone and 2. To leave my house. So I finally decided to order delivery and got a meatball sub and fries. Because I was literally paralyzed by the thought of calling and picking up food. I even dialed the number once but never called. I was afraid they wouldn’t understand me. Afraid I wouldn’t say it right. Afraid I wouldn’t walk in and pick up the order correctly. Absolutely ridiculous stuff! And I know it’s ridiculous. But fear is a powerful motivator (or anti-motivator, as it were).
I’m afraid most of the time to try to fix things in my house, afraid to decorate, afraid to make decisions because (*gasp*) I might do it wrong. I’m afraid to ask for help sometimes because I don’t want to look dumb. I’m afraid of failure. So many times I just don’t try.
I am also insecure in my relationships and friendships. I constantly worry people don’t like me and will leave me, turning the most innocuous event into a massive story in my mind with me being the victim every time. I search for positive feedback incessantly and I know that HAS to be annoying to anyone with me. I cling tightly to the people close to me and fear even a moment of letting go, even when I know I’d be better off without certain people anyway. Because I’m scared to be totally alone. I know I’m fine but I HATE doing anything alone, without that buffer of someone else to laugh with me if I screw up. Again, I know it’s ridiculous but it’s a hard fear to just drop.
I get depressed because of my anxiety, and I then feel like I’m not good enough…not a good enough friend, partner, coworker, mother, daughter, etc. My brain has me believe I’m worthless. And the cycle continues.
Everything is just magnified now with the pandemic and people fighting over human rights (like, why even is that a fight?) and I have watched more people die in the last 3 months than I ever have in my career. Add to that the continued side effects from treatment and the entirely different anxiety of dealing with chronic health conditions and I’m just drained.
I’ve been in therapy and I’m back weekly meeting with my therapist. Ive been studying more and more Buddhist wisdom about happiness and meditation, and it’s working. Slowly but surely I feel myself changing. I KNOW I can love me. I know I DO under all this noise my brain creates. And I know I deserve to be loved and I’m just as bumbling and confused and lost sometimes as every other person on this planet. I know if anyone does judge me, they’re just as lost as me and making fun of me just makes them feel better about themselves in a way. I know people care about me and I know I’m doing the best I can to be a good mom and friend and partner and daughter and coworker. I know I’m doing my tiny part to make the world a better place.
I know who I am underneath the fog of anxiety and depression. Sometimes it’s just a little hard to find her again.
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.
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. ❤
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.
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.”
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.
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.