Get Me Off Of This Ride

Cancer is an emotional roller coaster.
There are days where it's not so hard. You're feeling a little better than usual and you have a little more energy to get up and see your friends or just watch some TV and not feel really sick while doing it.
Then there are bad days where everything hurts and you don't know how to describe what you're feeling but you just don't feel good and you're angry and a little sad and you feel like everything is going to be terrible forever.
I remember one day when I thought I was getting the last of my chemotherapy treatments. It felt like a good day--like I was finally going to be done with all of it. Then everything changed in just a moment and my doctor told me there would be more and that I needed to start considering getting radiation as well.
I thought I was done. I thought I was almost done, at least. And doctors always have that "why do you look so upset at this news" face on like you should have known that it wasn't over yet. You should have known that you couldn't possibly deserve to be done.
I will never be able to fully explain what it feels like to have to drag your easily-car-sick-self to a hospital that's twenty minutes away to force yourself to sit in a chair for seven hours on end with a needle in your am that's pumping chemicals into you that make you feel like absolute shit. But when you're sitting there thinking that that is going to be the end of it and you get the bad news it's like your world is ending all over again. I would say it's like taking candy from a baby-- easy to do for the doctor and mean to the baby but it felt like I was a baby who had just had everything it ever liked taken away from it---and it seemed pretty easy for the doctor to do.
And chemotherapy isn't just like a class you can skip because you have three unexcused absence days. You don't really get to say "I don't feel good enough to go" or "I just don't feel like it today." I don't get to be scared about just a bad grade. I have to be scared about the size of the mass above my heart and how sick I will feel and how much longer I won't have any hair and what I'll have to worry about with radiation and what cancers I could get from that and school coming up and how many more treatments there are left and OH GOD that means I have to see that social worker more.
The last day of my treatment was on Halloween of 2014. I don't remember being very happy about it...I remember just wanting it to be over with and by the end of it I left feeling pretty indifferent about it. In fact, I think I may have snapped at my dad about something because I was in a pretty bad place feeling like it wasn't even over yet. Like I knew it would never feel over.
When radiation treatments are finally over the assistants expect you to ring a bell they have in the hallway as a celebration. Freedom, celebration, it's over! --- or something like that. Except just like with the end of chemo I didn't feel great about it. I grabbed the rope and hit it against the side once and it was lame. I can't think of a better word. It was lame and thinking about it now I kind of regret not just going ham on it. I just sort of rang it once and walked out and didn't look back.
Cancer is an emotional roller coaster that sometimes stops in the middle because of technical difficulties.
You get to sit there without an explanation as to why it's not on its way up anymore.
Just like Disneyland...or I guess LizzyLand or whatever (see this didn't have to be all that dark that's funny haaaa)...but there aren't any employees to tell you anyways so you're sort of just hoping that it'll start back up again sometime soon.
And then sometimes there is no roller coaster at all because you just remember it like a bad dream now that you didn't get to wake up from until recently.
You tell yourself that nightmares are silly and that they aren't real...
And maybe, if you try and go back to sleep, you'll have a better dream this time.

But wait! There's more! (There's more?!)

  No one talks about what happens during chemotherapy aside from the hair loss and nausea. Maybe the weakness--just not in depth.
  I pushed away a lot of people who cared about me because I was either too weak to deal with anyone being around and/or because I had fallen so deep into a dark place that I didn't have enough of me left to care about what was happening around me. I wish I had learned earlier that I would lose many people I now wish I hadn't. I was selfish and sick and still believe there's no excuse for it. I didn't surround myself with all the right people. If you're reading this, I'm sure you know who you are, I'm so, so sorry from the very bottom of my heart. I will always love and appreciate you more than you know.
  Now of course, along with all the emotional turmoil came the physical limitations, set backs, and side effects.
  No one told me that I would be so weak that I couldn't stand up for ten minutes at a time or hold a notebook that weighs less than a pound without shaking and feeling faint. I still have trouble standing up for long periods of time and I do still get worn out pretty easily.
  No one told me that I would lose the ability to taste my food making eating just another thing I had to do to get through the day. Do you know how utterly frustrating it is to bite into a grilled cheese sandwich and have it NOT taste like the cheesy goodness you know all too well?
  No one told me that eventually I would get so sick that doctors would be afraid to let me eat anything that came from the ground for fear of me getting e.coli or something worse. Salads, fruits, vegetables--all of these were out of the question. I never thought I'd say I missed eating salad. I had to get neupogen shots (they would help my body make white blood cells / prevent infection) and they hurt so much that I would sit there literally saying OUCH WOW THAT HURTS WOW out loud until the nurse was done. I was a 20 year old baby and no one likes shots but I'm not exaggerating when I say that a neupogen shot hurts like absolute hell.
  No one told me I would start to lose the feeling in my fingers then my hands and slowly my feet because of the chemicals from the chemotherapy. Nobody told me that was really bad either so I let it go on until I almost lost the feeling in my hands forever. They told me "the feeling might come back in a few months if it does at all." My handwriting looked like absolute shit for a while because I couldn't even get a good enough grip on a pencil to write the way I wanted to. I was supposed to return to school in the fall with seven year old handwriting. Fuck.
  There were times where my friends would visit me but after sitting up IN BED for fifteen minutes (Yes, you read that correctly. A whopping 15 minutes) I would be so worn out that I had to ask them to leave. Can you imagine having to do that?
  Lastly, nobody told me that there would be a pain so indescribable that I would feel completely helpless. MY BONES HURT. Everything just hurt. Massages barely helped but I sat through a few of them even for a moment of relief. I was desperate to find something to make me feel like I didn't just want to give up and die so it would all go away and I knew that there were so many people going through so much worse than I was.
  I sit here thinking that if my cancer comes back or if I have to deal with another one because of the radiation treatment I got (there are risks now for me such as thyroid cancer, lung cancer, breast cancer...) or just because breathing air, living your life, or eating McDonald's french fries (I will never stop. Their fries are gold.) gives you cancer that I will not be able to sit through more intensive treatment and that is a scary thought. There were times where I would find myself crying into a friend's shoulder saying "I can't do this anymore!!! I don't want to do this anymore!!!" but knew that there was only so much left to go and at least I wasn't given an amount of days I had left to live.  
 There will be good days, bad days, okay days, terrible days, and days you just want to die. We live for the good days and okay days and days that you get the good news and days like today where all I have to worry about is this stupid cold I have. Today, I have hope, my hair, the feeling back in my fingers, all my tastebuds in tact (and FUCK YEAH did I enjoy the chocolate chip cookie I just stuffed in my face), and the only reason I hurt is because I slept in a weird position and my cat bit my finger, and I can hold my entire backpack without shaking, and I am STABLE.
I am slowly but surely getting up.

Attitude is Everything or Whatever

   I thought having to sit for seven hours on end with chemicals pumping through me was torture enough until I was introduced to the social worker that would be coming to each of my treatment sessions. She wasn't 100% terrible and actually ended up doing some really cool things for me like getting me a gallery space in the Jennifer Diamond Library in my cancer hospital for the "Survivor Art Series" but I still wasn't ever fond of her visits mid treatment.
   Don't get me wrong. Social work is very close to my heart as my mother is a social worker and I have always wanted to get involved in that field...but being on the patient/client side of it all when I didn't ask to be? That was asking too much of someone that already felt like they had no control over what was happening.
   I was sent this peppy, pretty blonde that bounced around the hospital as if she wasn't surrounded by death and disease. Bright and cheery and here to tell you that "Things get better!" and that you just have to take things "one step at a time!" which I'm sure is very helpful for a lot of other people...I just don't personally like going to people for help when it comes to coping with what's happening to me. Again, I didn't ask for her...so it sort of felt forced upon me.
   She would make whoever was with me leave the room (which was generally just my dad) and ask me a series of personal questions all revolving around how I was feeling. For the most part I was rude and stand offish and gave her short, unhelpful answers.
"I'm no better than last time"
"Okay"
"I just hate it here"
"I just don't want to be here"
"I don't know"
All of which warranted responses like "Why do you think that is?" or her trying to figure out how she could help me even though I figured I had made it very obvious that her presence was only a bother (and the "Bite Me Cancer" merchandise that she gave me wasn't a big help either).
   I refused to go to AYA groups or anything that involved being in a supportive place surrounded by people I didn't know.
(She asked me if I wanted to go to some makeover day too to "feel prettier" and I think that also made matters worse)
All I'm sure she got out of me was that I hated being there, I hated that I was losing my hair, and I hated how sick I felt. I wasn't ready to divulge the rest of my feelings with anyone and I wasn't about to start with her. It must be sort of hard to understand when you aren't the one being thrown into the middle of a terrible situation. Right? But I guess they're trained or whatever. I guess I wish I had the option to tell her I didn't want to see her but maybe in the long run it was helpful to have someone outside of the entire situation that tried to care. Maybe. I'm still on the fence about it.
    It wasn't until after the entire treatment process that I was able to try and appreciate her incessant tries and also figure out how I felt about the situation more.
   In the hospital I was indifferent and cold and closed off.
   Behind closed doors, distanced from all the loud beeps and nurses and medicine I tried so hard and was eventually able to word how I thought a little like this:
--
Your bones scream for mercy from this sterilized sickness and the chemicals
You are dying from the inside out and you're going numb
You can't feel your fingertips anymore but what would you want to touch anyways?
There is a sword hanging above you held by a breaking thread and there's already a sharp needle in your arm
Your coughs taste like saline and as you brush your hair behind your ear you lose some in your fingers
And you are breaking and nothing feels right
You are asked if you have a will
You refuse to listen to these words
You don't listen to most of what's coming out of anyone's mouth because all you're hearing is how much pain you're in and how you'd rate it on a scale from 1 to 10
You are helpless in a body you thought you'd have a little more control over by age 20
And you are at a 10 and dead inside
--
Things were up and down always. But this quote stayed with me for the most part:
"Cancer may have started the fight, but I will finish it"

So yeah. Bite me, cancer! You fucking suck(ed)!...but you showed me a support system I didn't know I had and for that, I suppose I'm grateful.

R-CHOP

     Every time I stepped into Norris Comprehensive Cancer Center and Hospital  I was signing up for bad news and at least two needles shoved into my arms. One for blood draw (which I am still not used to) and the other for the IV that was put into my arm to deliver the chemotherapy. The treatment I was going to receive was called R-CHOP. You're welcome to click on the link there to see just what drugs are given within that treatment.
     Going into this you expect the worst--hair loss, nausea, weakness and all the other fun things that come with chemicals basically killing you from the inside out. I didn't expect to be asked if I had an advanced directive or if I wanted to make one while I was there. A fucking will? You want me to think about my death? I refused and moved on quickly trying to brush it off.
     Before I could start the treatment sessions (they lasted up to seven hours straight) I was given what felt like an extremely high dose of Benadryl through my IV as well as Claritin (an allergy medicine that helped reduce flu like symptoms (chills, etc.) that some of the chemicals induced) and Prednisone, which is a corticosteroid and quite possibly the worst tasting thing I've ever had ingest. I requested that I had an anti-nausea medication given to me as well before starting even if it didn't help as much as I wished it would. Unfortunately, the Benadryl always made me shake uncontrollably and nurses would cover me in multiple heated blankets thinking that would help. I don't think that ever made it totally better. Thankfully, by the end of my treatments I was able to request that Benadryl not be given to me.
     I can't for sure tell you just what made me sit or lie down (if I was lucky enough to get a private room with a bed as most of the chemotherapy stations were huge and uncomfortable gross blue chairs surrounded by a ton of other sick people) and do nothing for the many hours I was sitting there with an IV pumping nauseating chemicals into my arms. One of them has even been named "The Red Devil" chemotherapy drug (Adriamycin) by patients who receive it. This is because it is the cause of most of what makes chemotherapy terrible -- the nausea, the hair loss, etc. Most people would try to sleep for the entire time or watch a show on the tiny bad quality televisions that are hanging by your side. I couldn't just ignore the fact that something I had been scared of my entire life was really happening to me...and doing something as trivial as passing the time by watching a TV show seemed silly when I had my life to worry about. The nurses never seemed to understand why I was so upset but as a 20 year old just recently diagnosed I can't think of a single reason why I wouldn't be allowed to be scared. Maybe they're just so used to being surrounded by cancer and chemicals all day that it gets easier for them. For me, it never did.

Birthday Biopsy and a Disappointing Diagnosis

It's just a few days after Christmas 2013 and I start to get a cold. This is nothing major. I've had more colds than I can count on all my fingers and toes together. A few weeks go by...whatever. Finals time rolled around and I hadn't been feeling myself for five or six months. I had two back to back colds and I was finally so sick of dealing with the excessive coughing that I finally got myself in to see a doctor at Student Health. Of course, like many of my experiences Student Health, this one just wasn't any help. The doctor listened to my lungs, said I was fine, and sent me on my way. The cold like symptoms persisted and I had to go back. (No, this does not mean that every time you get a cold now you should be worried that your fragile body is riddled with cancer. This is a special case.)

The next doctor didn't feel quite the same way as the first. She knew there was something more to the story. There was what looked like a distended vein on my abdomen from my solar plexus to my bellybutton--like the ones that puff up on your hand--and I still had a terrible cough. She decided to run tests and have some x-rays done. Unfortunately, there was a mass above my heart that needed to be looked at further. (It ended up being what caused the vein which popped up because what normally helped get blood back to my heart was being blocked off.) I didn't have very many details so I visited my next doctor worried but hoping that it could just be something that could be taken out and that would be that. The word cancer never crossed my mind. I was sitting in the waiting room scared shitless that I was going to receive terrible news and my parents were doing their best to reassure me that the news just couldn't be that bad. 

We were finally called into the doctor's office. He sat us all down and said it could be a few different things-- lymphoma and three other things I didn't care to remember the names of because they were too rare and too terrifying to be considered by someone who barely went in to get her yearly flu shot. I had no idea what lymphoma was. I always blocked anything scary and medical out of my life. I tuned out and looked at my phone bringing up safari quickly to search up what that could possibly be and skimmed Google's results:

Lymphoma is a cancer

Lymphoma is any of a group of blood cell tumors that develop from lymphatic cells. 

Lymphoma is a group of blood cancers that develop in the lymphatic system.

So it was cancer. My stomach dropped and I'm sure the color drained out of my face. You are trying to tell the girl that refuses to ever visit the doctor that she's about to deal with something like THAT?

The doctor finished saying whatever it was he ended up blabbing about to my parents and excused himself for a moment. I turned to my parents and just remember saying "Cancer. Lymphoma is cancer. I have cancer." They were in disbelief and kept shaking their heads saying it absolutely couldn't be and that there were other things it could be. Why would their little girl have cancer?

I was convinced. After all, that was the doctor's first guess. Why would he be wrong? I had to schedule an appointment for a biopsy to confirm that it was indeed one of my worst fears.

I walked out, trying not to cry. I was so angry. Of all people...why in the world would I get cancer? Why now? Why ever? The whole ride home I barely spoke. I couldn't think about anything else.

I went to get the biopsy done a couple days later but I was so scared that my palms were sweating. I had never had an IV put in my arm nor had I ever been put out in my life. Dentist's visits didn't even get this scary and I was sure that was as bad as my life could get. I was sure that I would be like one of the actors in those freak surgery accidents that woke up in the middle of it all, awake, and unable to scream for help. No one was able to make me feel better about it but the IV was finally in and the anesthesiologist was explaining to me what was about to happen--even though I told them multiple times that I didn't want to know. They injected the anesthetic into my IV and I started getting tired fast. I said goodbye to my dad and they rolled me into the operating room. I was so close to being asleep at that point but they were asking me to move onto a different bed (which was totally unreasonable because I could barely lift my head to look around). I moved over with a whole lot of trouble and one of the last things I saw was some terrifying slew of words about what was happening with me written on a small white board. From there I took a few breaths from the oxygen mask and I was out. 

Next thing I know I was waking up in a bed but I could barely keep my eyes open. It was done and I had a huge bandaid at the base of my neck. They told me to get up pretty soon after to go home but that was also pretty unreasonable seeing as I could barely keep my eyes open long enough to understand what was going on around me. 

So I left and the ride home was miserable and I slept on the couch all night.

Two days went by and on my birthday, May 12th, it was confirmed. I had Non-Hodgkin's Lymphoma and would need to undergo treatment. Happy Birthday. 20 is about to absolutely suck. 

Cancer Sucks...Seriously!

     Researchers from the University of Michigan School of Social Work, Brad Zebrack along with some of his colleagues, present information from a qualitative analysis providing new information, including statements from personal experiences. The researchers survey adolescents and young adults (AYA) on their experience with cancer and the medical care they received to determine how or where to make improvements to care for this specific population of people within the cancer community (assuming that their needs/experiences differ from older populations). Zebrack and colleagues strive to close the gap of understanding/information between the frequently studied older adult population and the understudied AYA population regarding cancer treatments. Results show that financial concerns and delays in diagnoses were a big part of personal worries and reasons for anger for patients within that AYA grouping. 

     Zebrack and colleagues identified 1208 patients from AYA ranging from 15-39 years old who were newly diagnosed with cancer between July 1, 2007 and October 31, 2008. Of these patients, 524 of them responded to The Adolescent and Young Adult Health Outcomes and Patient Experiences (AYA HOPE) survey. The researchers used qualitative methodology to code survey responses. Most AYA patients were satisfied with the medical care they received. However, dissatisfaction revolved around "lack of information about drug effects and protocols, alternative treatment options, complementary and alternative medicine, and appropriate follow-up care upon completion of therapy.”

     This article would be helpful for those wanting to get an overview of the experiences of an under-researched group. In addition, the authors provide topics that can help focus future researchers’ questions in order to better investigate how to satisfy future medical needs in AYA cancer patients. 

LINK FOR EASY ACCESS>>> http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3902666/

Zebrack, Brad, Erin Kent, Theresa Keegan, Ikuko Kato, Ashley Wilder Smith, and AYA HOPE Study Collaborative Group. "'Cancer Sucks,' and Other Ponderings by Adolescent and Young Adult Cancer Survivors." Journal of Psychosocial Oncology 32.1 (2014): 1-15. Web. 20 Jan. 2016.

Hello, World

 I’m sorry…I pretty much chose a topic that would be both depressing and full of unnecessary dark humor at times: cancer. I guess you could also be the person to find those two aspects in topics on world tragedies or elderly people falling down…if you’re that kind of person???? How dare you be that kind of person???? Ahhhh, comedy*.

     Anyways, I guess unwillingly coming from a personal relationship with cancer I feel as though I’m allowed to get to that sort of ‘dark humor’ place with it. It’s not meant to be inappropriate or offensive, it’s just one of the ways I learned to deal with my time spent with it. And while having cancer is indeed one of the biggest struggles I’ve faced, I suppose I’ve come out of it and the experience going through various treatments with some funny* stories. Or weird. Doctor-related things mostly get weird. Then again, it could just be the way that I’ll end up wording my experiences and how I talk about how disgusting the processes can be that will end up somewhat humorous. I’ve spent so much time mulling over some of my experiences in my head that I feel as though I should write my thoughts down somewhere. After all, a lot of them haven’t been spoken about once since 2014. It’s not a very comfortable or light hearted topic so it’s not as though it would be easy to bring up a lot of what I may have wanted to express. Why unnecessarily depress your immediate family and friends if you don’t absolutely have to? Am I right?

     All jokes aside, I suppose that this topic is important to me because I really haven’t had the time to express my feelings on a lot of what went on and I also feel like delving back into the experience might help me deal with the fact that it happened just a little bit better. I do not view myself as the cancer survivor who fought the battle and won who is now expected to value life and my meaning here on Earth more. I am angry at the fact that it happened and to be quite honest, pretty blasé about it considering. Putting up walls and forgetting (in a sense) about the situation is a pretty weird coping mechanism—so I guess I’ll be talking about that as well. I really wanted to get to a place where I could stop putting up these mental fronts and feeling like it was almost a dream and let some very real memories back in…even if they are literally nauseating at times. I want to talk about my diagnosis and biopsies along with my feelings towards them and what I had to go through to find out I even needed to get to the point I am at now, doctor’s appointments, laboratory testings, blood-work and IVs, more tests, chemotherapy, social workers visiting me during chemotherapy, limitations, physical responses from my body from the treatment, emotions throughout it, radiation, how to deal with getting bad and good news, other people’s feelings with it and how they’re dealing with someone they know having cancer, how I personally feel about other people’s feelings on the matter, coping mechanisms on my part and how that differs from totally different views on that matter, getting better, getting to a stable place, and finally, how I am now and what lies ahead for me. I can’t guarantee that I can get 15 great weeks out of this topic consecutively or that my research papers will be phenomenal but I really want to try for my own sake and for the sake of those with questions about cancer which, by the way, are five hundred trillion and one. Other people’s questions usually begin with “I hope you don’t mind me asking but” or “You don’t have to talk about this if you don’t want to but” or “You must get this a lot but” followed by “How did you find out?” because everyone is terrified of finding out they have some sort of cancer one day or “Are you okay now?” or “What’s that scar from?” unless you’re one of those rude drunk people who say something along the lines of “Is that a hickey? Ha ha ha” or “Smoke too much?” which is totally cool and all except that actually pretty offensive because what if I did smoke too much and the hickey commentary is just ignorant because scars don’t look like that and what a weird location to place one anyways. And of course, questions also get to the *deep* “Does this make you view life differently?” or “Aren’t you proud that you’ve beaten it?” though I don’t see being stable as having totally beaten it because I’m always absolutely still terrified of it—something I will talk about most likely towards the end of the weeks working with this blog. Thanks for reading through this if you actually ended up getting to the end of around an 850 word post. I’m somewhat excited to get into this.