Marcy's Journeys

Originally my travel blog, now devoted to my battle with Acute Lymphoblastic Leukemia. The world of cancer is just another place I'll travel on this crazy path I'm on, and I hope you all enjoy traveling with me :) 

[marcyvabroad]

Your Burden Gives You Wings

3.25.19

As I walk a new path - both literally and figuratively - I find myself lost in thought. I have done it! I have sparked the age of self-actualization by pulling the trigger and moving out on my own. Inevitably, new concerns arise as my brain struggles to sit in it’s own contentment and finds a way to create new problems to occupy itself.

I find myself experiencing a sense of responsibility towards my past, well, maybe not my past but to those experiencing what my past self went through. I feel responsible for going back down the mountain of self-actualization (not that I, by any means, have peaked) to offer a hand to those in the trench. I did not ask for cancer, or for any other trauma in my life, and for years now I have resented it. Sure, sure, I am 100% honest when I say I am glad to have grown from my pain, and learned that you have to lean into it to heal it. Oddly, I’m glad to have had my terrible experiences because they make me better at what I do, and make it easier for me to relate to anyone. Everyone wants to be heard, and to have someone say that they do not judge them for thinking, saying, or doing terrible things as a result of their own horrific histories. I feel my experience has given me the opportunity to truly understand the pain of others. Or, at least recognize that I cannot understand their pain but know what it means to need to be heard so that someone else can feel this burden you carry.

So now, I feel that I must lend myself to the support of young adults struggling with cancer. This was recently sparked by a conversation I had with my sister, who is a nurse on a post-op floor for joint replacements. She told me she treated a client who was a young adult who had her hip replaced after complications from ALL - just like me. She was able to use my story to relate to the family, and as it turns out, they had already heard of me! The oncology team had already told the girl that there was another patient of theirs who had two hip replacements, and was out there living her best life, even after all she went through. It turns out, I had been a source of ease for this family, a reassurance that despite how scary this young woman’s circumstances have been, you can come out the other side and be whole. The mother of this woman begged my sister for details, “Did she really go to grad school despite chemo-brain? Is there a chance that chemo brain won’t limit my daughter’s ability to continue to progress in life?” “She lives a ‘normal’ life now?”

I don’t say this all to toot my own horn, but I did feel a million feels when I heard this story. I was reminded of how grateful I should be that I survived at all. That I was able to go to graduate school, get a job, have relationships. That I had my hips replaced and still rock a bikini, hike mountains, and do yoga. I was also thrust back into the pain of the past. Reminded of a time when I had little hope, was unsure what to look forward to, convinced that any sort of “normalcy” was off the table and I was plagued for life. In a way, I am still plagued by the haunting feeling that relapse could be around any corner. But I don’t live my life like that anymore - in desperate search of hope, solace from my pain, a person to understand the infinitely gut-deep horror that can haunt my thoughts at the slightest sense of lethargy.

Which is why I now feel responsible. To pick back up, to keep sharing my story even though I want nothing more than for some sort of “obliviate” charm to erase my memories of such a dark time in my life. I feel responsible to share that despite years of my life being dedicated to hospitals, the scent of saline, to slowly figuring out what the fuck to do with my hair, I am now as un-sarcastically as I can put this, living my best life.

I chose to heal myself, which was not easy. And I am not, by any means, all healed. But I am at peace with how my life is now. I fought through occasionally throwing up in the office trash can, awkward conversations on first dates about ports and battle scars, through bouts of forgetfulness, self-doubt, and depression. I sought out help through my therapist, who I am not ashamed to say I have been seeing for 3 ½ years now. I pruned my friends down to those who didn’t mind my limited mobility for months on end, dumped partners who didn’t empower me, and learned to set boundaries with others as well as myself in order to make every shred of this life as “worth it” as I can make it. Because I have lost friends to this disease. Because I know this life could be stolen back at any moment. I choose to find ways to make this life bearable, and I want to share that with anyone who cares to hear it.

[marcyvabroad]

A Eulogy of Sorts

Today is the funeral. I wrote this almost a year ago, and I still feel the exact same. This world is broken and will upset me a million more times before I’m gone, but maybe because of people like her, I’ll see the good, too. 

2/5/2017

How do I even begin?

My friend is dying.

And sure, a lot of my friends are dying. If we are being literal, all of my friends are dying. But one of my friends is dying NOW. She is actively dying and there is nothing anybody can do about it.

She told us today, me and my friend Dave. We have all been “cancer friends” since the late fall of 2015. That was when we were all being actively treated at the hospital together. I met Dave in the clinic on a day we were both getting infusions. I met Kate at a coffee shop a few weeks later when we all decided to meet.

I remember being confused about Kate. She had so much hair! She looked so healthy in comparison to me! Only a few minutes later did I closely look and realize she was wearing a wig. She was wearing fake eyelashes. She had drawn on her eyebrows.

We all got closer over the next year, meeting up more regularly, attempting to form a non-profit group to support weirdos like us who don’t fit the typical cancer mold. Young adults who have cancer and are trying to figure out how to keep living.

I remember last spring, when both Dave and Kate were in remission. I was technically in remission, but still undergoing chemo as part of my planned regimen. I was just starting to realize how my AVN would affect my life long term. I was struggling to grow my hair back, had recently been broken up with and was feeling pretty down on myself. Feelings of envy began to grow as I watched Dave and Kate do normal things again. I was so sick of being sick, and I felt as though between the three of us I was the “worst off”. Explaining to my friends that they were done and I still had a year and a half to go, telling them for the first time out loud that I was envious and how I longed for the health they had.

I wish I was still the one who was worse off than the rest.

Kate’s tumors came back in her lungs. Undifferentiated sarcoma. That means her cancer is behaving in such a way that is not common enough to have its own category, its own name, its own treatment. I began to realize how lucky I was that people had ALL before me. That there was a treatment out there, that my cancer behaved in a specific way that was common enough to have already been researched. That although my statistics weren’t favorable, at least there WERE statistics.

I remember when she told us it came back. I had a vague understanding at that point that this was not great. She told us she would be in a clinical trial, which is when I realized there was a good chance this would not be curable. They were going to use drugs that maybe could work, but who knew how well? Or for how long? But Kate was optimistic, talked about other things, still went out with her friends to tailgate parties and normal college events. She did a good job of keeping others from worrying because she did not seem to be worrying. She even stopped wearing her wig as her hair came back. Last fall she set the standard for what cancer patients could do to look beautiful.

A few weeks ago I saw she was going to New Zealand. It seemed like a big risk… to leave the country while going through this. That was when I knew.

This was a bucket list trip. Not your fun and romanticized #bucketlist that you post on your insta every time you do something big. A literal, this is the last time I can do this, bucket list trip. She was going because it was going to be downhill from here. This was the healthiest she would ever be. I wondered about the reality of it, hoping it wasn’t true. I thought all of the stupid things that “others” think when they aren’t the ones experiencing “it”. “I feel like I should do something for her”, “She’s only 21, she’s too young for this”, “But she seems so healthy”, even today I caught myself thinking, “Ok, but if I could just get her on Ellen”.

But the truth is there isn’t anything anybody can do for her beyond what the doctors are already doing. No amount of money is going to fix this. Even if they developed a cure tomorrow it would take years of animal testing, followed by years to publish that work, followed by years to spread that work and develop clinical trials… she even said herself today that she doesn’t have that kind of time.

My 21-year-old friend is dying, and there is nothing more that can be done to stop it.

So what do you do? What can be done? That’s the reality of the world. I knew going into making “cancer friends” that inevitably, we would not all make it. Hell, I still might not “make it”. Half of the fucking population will probably eventually die from cancer, and that’s the reality we have.

But Kate posted this photo a few weeks ago to instagram of some redwood trees. The caption was this:

“As soon as a redwood is cut down or burned, it sends up a crowd of eager, hopeful shoots, which, if allowed to grow, would in a few decades attain a height of a hundred feet,and the strongest of them would finally become giants as great as the original tree.” - John Muir

Now, I don’t believe that anyone will ever be as great, and uniquely beautiful and influential as Kate Conzelmann. But I think she was saying something profound about her situation. She may be fated to die before some others, but her life and her influence on those around her is sending out those eager, hopeful shoots. Those eager, hopeful beliefs that are now rooted in each of the lives she has touched. Her life is beautiful and valuable, and the lessons we can learn from her vibrance and strength are now rooted deep inside of us. It is our job to nurture those. To let her life force live on through us, to make us stronger because of her. Despite her situation, she has the power to inspire us to become giants, and to become better people for having had the privilege of knowing her.

[corind]

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[marcyvabroad]

WTF

I was scheduled to get steroid injections in my hips today to relieve my pain. The pain that has kept me from having a full night of undisturbed sleep for over a year. The pain that makes me use my arms more than my legs to climb a flight of stairs. The pain that makes me enviously look at everyone's legs as they walk around, not realizing how lucky they are that they don't even think about it. I took a half day at work, having to ask a coworker to cover an appointment for me in order for me to get this procedure. I hobbled into the orthopedic oncology office, nervous but ultimately excited to finally have some relief.

Only to find that they don't do steroid injections in hips at the office that scheduled me. The front desk staff  who scheduled me had assured me this procedure was "not a big deal" and "they do it all the time". I was sent home immediately because they could not complete the procedure due to a lack of the appropriate equipment. 

Now, I know no one in that office knows what is going on in my life right now. They do not know that even going into this appointment today I was in a bad place. But I can’t help but feel extremely angry with how all of this went down. 

How could I have been scheduled if they don’t even do that procedure in that office? How did no one catch this until the day/moment of the appointment? And given that they work almost exclusively with cancer patients, how were they clearly not provided with any sensitivity training?

Also, Universe, I THINK I HAVE LEARNED MY LESSON THAT LIFE IS UNFAIR. YOU CAN STOP AT ANY TIME NOW. 

[marcyvabroad]

Vantage Point

Life is the ultimate opportunity.

 In thinking about preparation for my future career, the weight of cancer in my life becomes exponentially heavier.

How do I explain to employers why I spent a year doing nothing? How do I explain that for the additional two years following that perceptibly lazy year I still couldn’t keep up with my peers? That even working part-time while going to school was too much? How can you fully explain to someone all of the ways that cancer held you back? Kept your physical and mental faculties at a lower level than your peers?

And you might be thinking, Marcy. Just tell them you had cancer, they will understand! But I don’t want to.  Telling them about cancer opens up so many other entrances to rabbit holes I don’t want to explore with them. I don’t want to tell my cancer story for the millionth time. I don’t want to get a free pass. I want to earn my way in this world with no favors. And what are the chances that anyone can hear about my experience and not – consciously or unconsciously – let that affect the way they perceive me?

 I have struggled a lot with “giving myself grace”. This is a phrase I adopted from one of the Child Life Specialists at the hospital, and found popping up out of the mouths of my therapist, my friends and my family. What I have learned is that giving myself grace is the lesson I’m supposed to learn from all of this. This lesson is not the one that I expected, nor is it the one that I wanted. I wanted something concrete and easy like, “after I got cancer I knew exactly what career I wanted!’ or “after I went through cancer treatment I found Jesus.”  Of course, the nature of our life lessons is that they are not ever the things that are easy. We struggle with them because they’re hard!

 So, in pursuit of not letting myself repeat old mistakes; in pursuit of working towards a resolve rather than allowing myself to struggle with this lesson over and over until I get it right; here is my attempt at using this knowledge to move forward.

 Life is the ultimate opportunity.

I never asked for any of this to happen to me. A lot of life stories are riddled with events that shaped us that were out of our control. My story is one of cancer. 

It knocked me on my ass. I spent almost a year not working, spending day after day trying to muster up enough energy to focus on a TV show without falling asleep. I spent the maintenance period of my chemotherapy over the next two years doing my absolute best to keep up with my peers. I kicked my own ass to pay my medical bills, my copays and prescription fees, and pay for graduate school. I experienced many setbacks that I did not want in my “grand life plan”, but I learned how to roll with the punches. I learned that dedication and perseverance are two things you can always expect from me, but I also learned a lot about boundaries and self-care.

I may not have worked full time, taken on grad classes and a GA, come out debt free or with spectacular credentials. But my life has presented me with infinite opportunities to grow as an individual, to learn what my textbooks, professors and coworkers cannot teach me. My life experience has been valuable, and I am doing myself a disservice by refusing to acknowledge the significance of that.

[marcyvabroad]

The quickest way to acquire self confidence is to do exactly what you are afraid to do. I'm afraid of what I look like, knowing that I have no control anymore. My hair is growing back curly, slow, and messy. I'm back on steroids that make my face puffy and pimply. But I'm going to make myself feel beautiful every day, and I'm going to post selfies if I want to because I deserve that. I deserve to feel beautiful no matter how different I look from society's expectation or standard. Fuck it. #cancersucks #shorthair #selfie

[marcyvabroad]

Clownfish aren’t funny. That’s a Common Misconception.

There are some common misconceptions about cancer. 

For example, here are some questions that I get a lot: 

1. What round of chemo are you on?  2. Wait, so you take chemo at home?  3. You’re on chemo... but your hair is growing back?  4. My (insert random family member/family friend) just found out they have cancer. What do you think their treatment will look like? 

It seems that the media has done nothing to actually educate the world on what the cancer experience is like, and how different it can be for each person. 

To answer your questions, 1) I don’t have “rounds” of chemo. No one has used that language with me ever. I have had my different phases of treatment that come with exciting names like “intensification” and such (that don’t make you nervous about them at all). But what round am I on? I don’t know. The one that lasts what seems like an eternity and occasionally makes me throw up at work?  2) Chemo is a term that is used to blanket itself over a myriad of treatments. Chemotherapy just means that they are treating my cancer with drugs. Not radiation, not surgery. Not all drugs work for everyone or for their specific type of cancer, so each person has a different chemo regimen. Like, I’m allergic to PEG-Asparaginase, which is standard treatment for ALL (pediatric regimen), so instead I take Erwinaze... everyone is different.  Most chemo drugs that people think about are the intravenous ones that require you to sit in a controlled environment in the hospital and be hooked up to a bag that infuses over anywhere from 10 minutes to 24 hours. However, I do take chemo at home. I take oral chemo AKA: pills. You can under special circumstances have an IV at home, but it’s not super common.  3) Not all chemotherapy drugs make your hair fall out. Just my tried and true bestie, Vincristine (among others), and sometimes only in high or frequent doses. Since I only get vincristine once a month, it doesn’t make my hair fall out anymore. If I were to get it every two weeks, it would make my hair fall out again. Just because my hair grew back that doesn’t mean this is over.  4) I know nothing about anyone else’s cancer. I have become an expert on MY cancer and MY specific treatment because I had to. That doesn’t make me an oncologist. I don’t know how they treat your friend’s cancer, I don’t know who is best to treat them or what they should expect... other than a bunch of bull that’ll fuck with their lives. That’s basically the only guarantee I have for them.  Speaking of these experiences, I also have no idea what to say to them. Same as you. I can tell you things not to do, or things that bothered me, but everyone is different. There is no “right” statement for when someone is facing cancer. It just sucks, and honestly, the best thing you can do is not forget about them 6 months from now when the shiny wears off of their cancer and nobody cares anymore. That’s when they’re going to need you. 

So. Even though I have no idea how many people even read this blog anymore, I’m going to attempt to explain to everyone what my treatment looks like right now. Because I’m sick of having to tell everyone how much longer I have or “how many rounds” I have left. Here it is:

I am in what they call “Maintenance Therapy”. It was supposed to be the pot of gold at the end of the rainbow, but really, it’s just another form of chemo which, as I stated before, blows. 

Maintenance involves me going to the infusion clinic at least once a month. On that infusion day I get vincristine through IV. Most of the time I also receive a spinal tap where they take some of my spinal fluid to test for lymphocytes and replace it with methotrexate. This usually is stated by saying, “I’m having intrathecal methotrexate while under intravenous sedation” because they (luckily) knock me out for it with propofol. 

In addition, I take mercaptopurine every night at home (that’s the pills). On the Fridays that I don’t have clinic I take methotrexate in pill form at home, too. Both of these meds deplete my counts, but they have tailored my regimen to my body’s reaction, and it only depletes them so much. Not so much that I will be neutropenic or need regular blood transfusions (hopefully), but still take their toll on my marrow. 

Finally, once a month I also get a breathing treatment - pentamidine - which keeps me from getting pneumonia. 

This is what my life is going to look like until fall 2017. It’s a pain in the ass, it sometimes causes spinal migraines, nausea/vomiting, lethargy, constipation and most recently, vertigo-like symptoms. 

I also see my therapist every week to keep me from going completely off the deep end because I’m 24 and sometimes ask my dad to check on me in the morning to make sure I’m still alive. 

So that’s my new normal. This journey is far from being over, which really just sucks because everybody forgot that cancer was hard about 3 months in. Life isn’t like the movies where treatment lasts for two or three months and then you’re done and go back to normal like nothing ever happened. Right now I’m bracing myself for needing a double hip replacement in my near future due to the necrosis which is a side effect of my treatment. I’ll probably eventually need additional treatment for my other organs because chemo takes it’s toll on those, too. I sometimes have to have people repeat themselves in conversation because my memory sucks, which may or may not ever go away. Sometimes I get dizzy when I stand up too quickly because my hemoglobin (while higher than it used to be) still isn’t what it should be. 

I am always open to questions about my treatment, so I hope that if anyone reads this post they are not deterred from inquiring about anything they are curious about. I just thought I would try to get the info out there so people know what it looks like. Maybe my new hashtag should be #thatswhatcanceris

[marcyvabroad]

Hello... it’s me.

I haven’t written in such a long time. I can’t say that I’m sorry for not updating everyone… It’s just not that exciting of a read when every day’s post would say something like, “Today I cried myself to sleep again because well, you know, my suffering still isn’t over.”

It’s been a never ending battle getting through the past year, and every time I thought I hit rock bottom, another obstacle was placed in my way. Maybe that’s just how life is. It’s a never ending battle where when it rains, it pours, and somehow you have to face every day and just hope for something good…

I might as well get on with the depressing update. I promise this won’t end as a hopeless tragedy, but in order for you as the reader to understand where I am you need to know where I’ve been for the past several months.

Let’s see… I’m not sure where I left off so I’ll just start in the new year.

I had been waiting for what seemed like years to reach 2016. I was supposed to start “Maintenance” therapy on December 16 actually, and all this time my doctors had been telling me “Just wait until maintenance, things will get better, you’re almost there!” Every time I went into clinic I heard this, a chant to keep my spirits up and my hopes of a less miserable future alive. Well, maintenance was pushed off an additional two months because my doctor “forgot” that I was not just in the high risk category for relapse, but the very high risk category, which meant two more months of treatment. (And I must say, hearing your doctor clarify that you’re not in the high risk category but the very high risk category is about as traumatic as it sounds)

So, with me starting school at GVSU for the MSW program and trying to work as a secretary for Pine Rest, I decided to take on that additional two months and try to work and go to school simultaneously. There were a few sick days from work where I couldn’t make it, and class was tiring, but I was determined not to give up on my dream of making my life back into some sort of shadow of what it used to be.

I even started going back to the gym which was exhilarating. I could at least speedwalk and row and lift light weights, and my body was getting adequate oxygen to my extremities! It felt amazing and even though I was still semi-bald, I started to feel excited and normal again. Until I started having pain in my knees when I tried to run.

As it turns out, I have necrosis as a side effect of high dose steroid usage which was part of my treatment. Necrosis is a hideous word isn’t it? Want to know what it means? It means that the tissue in my joints is deteriorating. If that tissue deteriorates, your joints begin experiencing excruciating pain. Eventually, the ball that fits into the socket of a joint could collapse, leading me to have to have a full joint replacement.

The necrosis now mostly affects my hips. It started out with me just not being able to sit criss cross and being told not to go to the gym anymore. Then it started being painful to stand up or sit down. Nowadays it’s a nearly constant pain that makes it almost impossible to put socks on.

In addition, Maintenance Therapy isn’t all that it’s cracked up to be. I really wish my doctors had not made it seem like the light at the end of the tunnel only to tell me when I got there that it was secretly just an additional circle of hell all along. There’s still nausea. There’s still additional days in clinic with blood transfusions (and allergic reactions to those transfusions…). There are still meds to take every day and nurses and doctors reminding you every day that you’re still at a very high risk for relapse.

But that pain nothing compared to the state of my brain.

Or of my heart.

In January we also found that my antidepressant was causing heart palpitations, so I switched to Wellbutrin. Unfortunately for me all Wellbutrin brought me was suicidal thoughts. It was crazy suffering from such a dramatic side effect. I knew the thoughts were a side effect, something that I couldn’t control, but every day I struggled with the thought, “Things would be so much easier if I were just gone.”

A few social workers analyzing me through suicide assessments later and I was switched back to Lexapro. I’ve gotta say, having the knowledge I have of psychology and social work really makes me feel like an idiot when I had someone on the phone asking me, “Do you have a plan to kill yourself? Do you possess the means?” Get out of my face. I know what you’re doing. No, I don’t have a plan. No, I don’t have the means. No, I’m not actually going to do this. Yes, I do need help.

During this time I also stopped taking the hormones that stopped my period for treatment. So with the combination of another bout of puberty (pimples and all!) and my anti depressants trying to work themselves out, it’s safe to say I was a damn hot mess. The chemicals in my body had gone haywire and were struggling to get back on track. I thought I was at rock bottom.

Until life said, “Good fuckin joke Marce! You think you’re alone? You think you’re in pain? I’ll show you what it means to be in pain.”

And so he left me.

My “moods are too unpredictable” and let’s all just be honest, he “wasn’t really attracted to me, no”. And I thought, “who could blame him? I went from looking like a dying person to looking like a lesbian. Did a heterosexual, successful and handsome guy who is invincibly 23 want that on his arm?”

The answer was no. No he didn’t.

So with a broken body, a broken heart, and a broken spirit, I began the struggle of trying to make it through each day hoping that I was worth something, or that I might be someday.

And I have to admit, I am still struggling. My body is still in pain, I still have another year and a half or so of treatment, and my heart is far from being completely healed. But here is what I have learned:

I must be nearly invincible. Even on the days when I’ve woken up and already wanted the day to be over, I’ve made it through. I am committed to bettering the lives of those around me through my work, through my volunteerism, through my advocacy and through my friendship. If I can make it through all of the bullshit that has happened over the past year, why can’t I continue to survive? How can I not eventually thrive again?

I’ve learned that your strength isn’t going to come from anyone but yourself. Your tragedies will eventually start to bore everyone else, because nobody wants an eternal sob story. But also, you need to be aware of how much self-respect you are or are not giving yourself in regards to how you allow other people to treat you. Because although your strength comes from within, you cannot underestimate the fact that you still need people around you to remind you that you’re worth something when you forget.

And everyone is worth something. I think you’re all worth everything. You don’t have time to be with people who allow you to feel ugly, to feel unimportant or annoying. You deserve the companionship of friends and family who can’t wait to hear what you have to say. People who believe that what you are doing with your life is amazing. People who will tell you that there is more to life than worrying about what you look like, than dwelling on the fact that you can hardly put socks on. People who might not know how to help, but stand there every day and remind you that life is worth the struggle.

Not to mention (although it’s still a struggle for me) you’re damn sexy. In whatever way you bring to the table. I recently posted a status on Facebook that said, “You are the only person who is in charge of how you feel about yourself. Nobody else can possibly do that. You get to decide if you believe you are beautiful or not, and nobody can take it away from you. If someone suggests that you aren’t beautiful, you can consider how sad it is that they have such a limited view of beauty. You can consider how unfortunate it is that they have such an exaggerated sense of self-importance that they think you should care about what they think. You can also choose to realize that it has nothing at all to do with your beauty and everything to do with their limitations.” —   Ragen Chastain.

You’re worth something. I’m worth something. And we both need to have the self respect to admit that. If I can make it through the day without literally driving off of a cliff then so can you.

In the meantime, I’m working as a Supports Coordinator now, still attending GV for my MSW and still working on building new relationships in place of old ones. I’m also working with some friends to develop a non-profit for young adults who suffer from health crises.

Fuck cancer, and all that it’s done to me. I’m more than a bag of bones being dragged through the universe. I have purpose. I’m going to make a difference in this world.

[marcyvabroad]

When you're preparing to say goodbye to the hair progress you've made <<<< •••••••• That's what nobody tells you. Sure, they tell you your hair will fall out. You cut it. You donate it. You cry about it. You live with it. You wear hats or wigs and put up with everyone and their bullshit about how "bald is beautiful". And then you finally get some progress! This round of chemo doesn't make your hair fall out! You start creating timelines in your head about how long it will be before your hair just looks like a pixie cut. How long it will be before it starts to resemble what you once had. And then they tell you you have another round of chemo after this. One with your tried and true best buddy, Vincristine. Vincristine doesn't care about your timelines and dreams of ponytails! So you have to shave it. Again. To keep it from falling in your food or dirtying up your pillow. To keep it from falling on your iPad while you play the sims. And you're back to square one. To Mr. Clean, bald and shiny, nothin but dreams of femininity or normalcy. That's what cancer is. #cancer #cancersucks #nohairdontcare #chemo #leukemia #marcybeatscancer

[marcyvabroad]

Spending a few hours in the ER doesn't seem so bad when you come home to snuggle these angel babies 😇☺️❤️🐶🐶 #puppylove #puppies #fosterpuppies #foster #boxer #boxersofinstagram #pitbull #pitbullsofinstagram #dogtwins #dogsofinstagram #snuggle

[marcyvabroad]

7 months later...

11/18/2015

7 months later

7 months later and you know how I know it’s not over?

Because I had to shave my head again today. Because my hair has been coming out in clumps for a few weeks now, but I’ve been putting off shaving clean. Because I had two beautiful months of growing out some fuzz on my nogin, and no, it wasn’t much. But compared to this? It was everything. It was feeling kind of normal again. It was almost feeling attractive again.

I know it’s not over because my life feels immobile. Because a lot happens in seven months, for healthy people. My closest friends have moved across the country, gone to school, acquired new jobs in their field, adopted puppies, gotten married and pregnant. This time in their lives is so precious! I’m so happy for my friends, that their lives are going so well and many of them are so successful. I know so many amazing people. But what was I doing 7 months ago? I was sitting in a hospital, hearing that I would start chemo in a few days. What am I doing tomorrow? Sitting in a hospital, getting chemo and hearing what my chemo plan will be like for the next few weeks.

I know it’s not over because I can’t choose to have a baby for the next two years. It was never my plan to have a child in the next two years anyway, but that choice is gone. I will be pumped with chemotherapy for the next two years, so even if I accidentally got pregnant I would never carry to term. I didn’t expect for this to make me as sad as it does. I should be happy! I get to know, 100% that I won’t have a baby for the next two years. How many women my age have that guarantee? How many women would love to have that assurance? But it’s a choice about my life that I don’t get to make. Because it’s not over.

I know it’s not over because sometimes my port is tender.

I know it’s not over because my body is covered in bruises from my lovenox injections.

I know it’s not over because last week I went to the emergency room, crying and screaming in pain because I was having withdrawal from my steroids. I had kept Tyler up all night, periodically bawling because my hips and knees felt like I was being run over. The pain was excruciating, and at one point I truly believed I was going to be paralyzed. My bones were being crushed, I was sure of it, and there was no way I could come back from that.

I know it’s not over because cashiers give me sad eyes. Or tell me, “your eyes, wow, they’re so pretty!” If my eyes were that pretty I would have heard about them in my first 22 years of life. You either a) think I need a confidence boost because I must think I’m ugly since I’m bald and sickly looking, or b) are shocked by my baldness and don’t know what else to say. Here’s a tip: don’t say anything about my appearance. All I want is to forget about what I look like for a SECOND but everywhere I turn I get people insisting that I have fantastic eyes or that I rock being bald. All that does is remind me that I have cancer. Thanks.

I know it’s not over because every time my coworkers complain about how short their stylist cut their hair, or how they’re unsure about how their new color turned out I want to punch them in the face.

I know it’s not over because everyone feels the need to mutter this useless sentiment to my neighbor who shaved her head, “I wish I was as brave as you!” Which is meaningless. What you mean to say is, “I cherish what I look like too much to cut off all of my hair. I’m weak, and I really  think that bald is not beautiful, otherwise I would do it.”

I know it’s not over because I still can’t feel my fingertips. Because when my doctors ask if I have mouth sores, I have to run my tongue along my cheeks to check because they are just a part of my every day now. Of course I have mouth sores. I always have mouth sores. I don’t even remember what not having mouth sores feels like.  

I know it’s not over because I can’t just up and move away to a different city, state or country because I’m too afraid to leave my medical team. I can’t take a 6 month adventure where I study in Cambodia. I can’t join the Peace Corps, probably ever now.

I know it’s not over because I have a closer relationship with my Sims than with half of the people who were my friends 7 months ago. And yeah, life is busy and if you’re reading this and you’re one of those people you’ve probably made excuses for yourself. That we never hung out much anyway, or you have so much going on, it’s just been a busy year. But for the people who have consistently made an effort, they have lives too. Jobs, kids, hobbies, and volunteer positions. But they’ve also made sure I know they are still there for me, even 7 months later when it seems nothing has changed for me.

I can’t wait for cancer to not be my life anymore, but won’t it always? Won’t I always be waiting for the other shoe to drop? Living the rest of my life in fear of relapse?

That’s what cancer is. That’s what it’s like.

[marcyvabroad]

Just messin around with my little surfer dude nephew 😹🙈🙊😸 #family #wiglife #cancersucksbutwigsarefun @bridgetdjohnson

[marcyvabroad]

Shameless duckface selfie because it's a rare experience to feel beautiful these days. #cancersucks #cancersucksbutwigsarefun #finallycoldenoughtowearthispuppy

[marcyvabroad]

Getting used to that wig life 😋👍 #cancersucksbutwigsarefun

[marcyvabroad]

On Being “You”

In my final year at Grand Valley I took a capstone class that changed my life. It made me feel confident in my own intelligence, made me question everything I thought I knew, and taught me to think critically and be able to articulate those thoughts into something meaningful.

During the course we discussed lying as a social necessity. Is lying necessary?

I just went back to read my responses to this question based on our readings for that week and found what I wrote about a man who had Parkinson’s. The man, Kinsley, lied to those around him so they did not know how sick he was. Parkinson’s was taking everything from him, and he did not want to live in that reality. He hid his illness so that the reality for his friends was that he was perfectly fine, therefore, they did not treat him any differently. I wrote:

“I think that for someone who wishes to live in their own reality, lying is necessary. The fact of the matter is that creating your own reality involves lying to others, but inherently it is also a false reality. Kinsley seems to be suffering from a lack of control in his life. A lack of control for a person with Parkinson’s is probably the basis of their thought every day.”

Damn, it’s like I knew, ya know?

And now all I can think about is how I wear a wig, and thicken my eyebrows with a pencil, and how I paid to have my nails done today. Everything’s fine, pretty and pristine. If I go out in public (without a low cut shirt) you may not be able to tell anything is wrong with me at all. But am I just striving for a false reality? Trying to fool everyone, even myself into thinking that having cancer is okay? I may be able to create that false reality for others in public, but that will never be my actual reality. I will still go home, take off the wig, wash my face and take my meds.

Another piece from my capstone course explored the topic of perfectionism. The author, Huss-Ashmore, discusses creating an ideal (physical) self that matches something that is culturally created. What is funny to me is that all I want is to look like I used to. I had insecurities then (before I was sick) but I would gladly go back to that physical self now; that self has turned into my new ideal.

I even perused old photos on my computer today just for the sake of nostalgia, and I seriously considered posting old photos of myself to Facebook. Photos of me with my hair all curled and my face all done up, photos of me tan and healthy. I wanted to post them to remind everyone, “Hey, this is still me! Look how pretty I am! Don’t forget that I am still that same person!”

But that’s not my reality.

And I don’t want to strive for an unattainable ideal anymore.

My therapist this past week told me that I need to get more on-board with my current self instead of dwelling on an older version. I kind of modified his idea and decided that, no, I am not my old self. However, that doesn’t mean that I have to lose my old self entirely. I can still choose to be as driven or hardworking as I was. I can still utilize the knowledge I acquired during that time to help me be my best self; a new and improved self after this experience. I can be a new and improved self right now. I can be better every single day that I put my mind to it.

If you would like to, go ahead and lie to others or yourself about what or who you are. I believe it is your right to do as you please. Which also means that if you wish to strive towards a cultural ideal as your outline for your physical self, go right ahead. It’s a free country.

But in the end, I think the option that will lead to the most happiness and self-contentment is to choose being honest in every moment. Be honest with others, but more importantly be honest with yourself. Figure out who you are and own the fuck out of it.

[marcyvabroad]

What if I had just shaved my head?: A miniseries

Episode 2: 

Barnes and Noble is the kind of place where you can go about your own business unnoticed. Filled with books and music and even some movies that take you away from where or who you are; alleviating your reality. 

I’m there with my sister, laughing, getting lost in the different choices of music or word, when 

BAM!

An older woman practically clotheslines me with her outstretched arm to bring me in for a great big bear hug!

Do I know this woman? No. Is she invading my personal space? Yes.

“Oh my, come here! I just have to give you a hug. It’s just about a year now since I was wearing turbans on my head!”

I am not wearing a turban. I am wearing a new headband that I thought was “normal” cute up until now, but apparently it’s pairing with my bald head makes it a “cancer turban” now. Great. 

I awkwardly thank her, though I’m not sure what for, and hurry out of the store. Heather and I spend the next five minutes trying to remove our jaws from the floor. 

[marcyvabroad]

What if I had just shaved my head?: A mini-series

Episode 1: Do I know you? 

Acutely aware of the lack of sensitivity from the architect who designed this building with basement bathrooms, I make my wobbly way down the large flight of stairs to the no-disability-access bathroom.

As I go to wash my hands, another woman exits her stall and tries not to awkwardly stare at my bald head and bruised-up chemo body. It’s only when I go to dry my hands that she turns to me and says, “Are you feeling better?”

I am caught off guard. This is new. Am I feeling better? Do I know you? 

I look at her bright, expectant eyes and see that she is genuine. But I also look at her cheap, hot pink lipstick that screams for her need to get a clue. 

Luckily for me, like most, pleasantries are a second nature. “How are you?”, “Good, how are you?”, “Good.”

So I settle on, “Yeah, I’m feeling okay. That’s why I’m out at a restaurant at all...” And try to scurry out the door, just not quite fast enough to miss her assuring me she will pray for me.