Scanxiety

That is probably a made-up word to you, but every single cancer patient knows what that word means.

It’s the scary feeling before you have your cancer scans done. That could be a CT scan, MRI, PET scan, or some other scan related to checking out any lurking cancer in your body. I am still going every 3 months but by December I should be switching to check-ups once every 6 months. Ironically, I am not looking forward to the long stays away from the Oncologist…

No, I don’t want scans done every three months forever, but I like having that safety net. I hope that my cancer stays gone FOREVER but once you’ve heard the bad news once, it’s hard for your brain to think it won’t happen again. And honestly, I think it would be more devasting hearing it’s back for a multitude of reasons but mainly because now you know what to expect. I had no idea what chemo was like or losing all my hair or having a catheter in my chest but now I do, and I never want to do any of that again.

I can’t speak for others but the scans themselves aren’t that bad. My CT scans usually last around 15-20 minutes (with contrast). I know as I am lying on that table that these results hold my future, but I usually toss that aside when I leave. It’s when I’m sitting in the waiting room of my Oncologist’s office that the anxiety kicks into overdrive. A lot of different memories come back to me when I am in that environment. It’s weird because that place has brought me so much joy and yet so much pain. They have told me some of the best news in the world and some of the worst. The epitome of bittersweet.

I have only been blessed with good news and I wish every cancer patient got to experience that. It’s truly hard living a post-cancer life. To me, it’s worse than having cancer itself because although the cancer has left my body, the thought of it never leaves my mind.

My scans are at the end of this month, so if you are reading this send your good vibes/prayers my way. I would appreciate it! Thanks!

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The Bald and the Beautiful

I miss my hair more than my amputated leg.

Let that sentence soak in for a second.

And yes, you did read it correctly.

I never realized how much I truly loved my hair. I have had long hair since I was a little girl. My hair was so long at one point that I would be sitting on it every time I sat down!

I remember the day I shaved all my hair off. I really wish I wouldn’t have done it so soon. I hear all cancer patient say, “Shave it before it starts falling out!” or “Take control of the situation before it takes control of you!” or something along those lines. My hair was definitely falling out when I shaved it, but I would have been much happier with thinning hair than no hair at all. I looked sick and I didn’t like it. That shaved head turned me from Marisa into a cancer patient. My shaved head was the stamp on my forehead that told everyone “This girl has cancer.”

Yes, I wore hats and attempted wigs for a bit, but I hated every second of it. Nothing ever looked right. Everything just looked and felt fake.  I wish I can say that faded away when my hair started growing back but I had to deal with so many awkward stages.

My hair grew in very thick and curly! Luckily, I didn’t get Shirley Temple curls, but it was enough to make it unmanageable for me. At one point I had a mullet. There was a little stage where I had little tufts of hair sticking up on both sides of my ears. My bangs did a whole other thing on its own. I think it ended up taking me about 15 months in order to get (basically) all my hair into one puny ponytail. It may be a silly accomplishment to most but what a momentous day for me.

I really wish I had known about cold capping when I started chemo treatment. I am not sure if it truly works but basically, they put this contraption on your head that is suppose to stop most of the blood flow up towards your scalp thus making the chemo unable to reach your hair follicles? I may have butchered the actual process of cold capping, but it is definitely something along those lines! I would have tried that in a heartbeat! I am assuming my oncologist didn’t mention it because he knew there was probably no way to save my hair.

I think I am at an ok stage with my hair. It currently reaches my shoulders. It’s been a long 16-month hair journey with no haircuts in between! Although I hope to never get cancer again, I think I would be extremely bummed about losing all my hair again. I wouldn’t shave it. I would hold on to every strand of hair until it fell out.  I always found it funny that people always told me I had a nice “head shape” when they saw me during treatment. It was a strange compliment to say that least. And I am sure people genuinely thought that but that compliment never sat well with me. I wouldn’t expect anyone to come up to me and say, “Hey, you looked way better with hair!” but I kind of wish no one would have said anything at all.

I have always struggled with self confidence issues and having no hair was a tough pill for me to swallow. I didn’t feel beautiful. No hat or wig on this earth could have made me felt better. A lot of people have told me that I should keep my hair short because it looks good and even though there are moments where I don’t mind the short hair, I know I wouldn’t want to keep it this way. Long hair is sort of symbolic of my past self. Although I am a different person, I want to get back to the normalcy I felt before I was diagnosed. Long hair won’t help cover up my scars or leg or scans but it can help me feel more confidence in tackling all the things cancer gave me to deal with for the rest of my life.  

Fear

Instead of succumbing to my panic attack, I thought it might be therapeutic to write about it.

Over the years, I’ve become more and more open about my anxiety and depression, but I plan on making this post as raw as I can get it. Without a shadow of a doubt about 95% of all my anxiety and depression stems from my intense phobia of getting sick. The proper term is Emetophobia. I really don’t like to use the term “throwing up,” so from this point out when I say “sick” I mean “throwing up” specifically.

I have talked to many other suffers as well as health care professionals and there are varying degrees and intensities of emetophobia. Some people are not bother by others getting sick, only themselves. Others are only afraid when they feel sick themselves and don’t mind when others have it. I have the best of both worlds. My anxiety is definitely more heightened when I feel “sick”, but I still have a major freak-out when someone near me is sick or even mentions that they don’t feel well.

And I have to point out a major distinction between people who don’t like getting sick and the phobia of it. I think it’s safe to say no one really “enjoys” getting sick but when you have a phobia of it…getting sick is almost like our world is collapsing in front of us. Our minds become consumed with “What did I eat?”, “How long is the incubation period for contracting a stomach virus?”, “Could I have food poisoning?”, “Why is my child more lethargic/why aren’t they eating? They must be sick”, “Why is my stool loose? This must be the start of a stomach bug.” These are just a few things that consume our minds when we are going through a panic attack. We start taking anti-nausea medicine, anti-acids, essential oils, teas…anything and everything in our arsenal to prevent something that 9 times out of 10 isn’t going to happen. However, every time we feel a twinge in our stomach our minds automatically assume that THIS time is going to be the one.

However, it goes beyond that. When my phobia was much worse than it is today, I had other thoughts cross my mind. When I knew I had to meet a friend for lunch, I had to come up with a reason why I wasn’t going to eat (just in case it sent me into a panic attack) or made sure I picked something semi-safe like fries or chips. I also knew that if I was going to meet up with someone, I had to be careful that I didn’t eat anything too “dangerous” the day before like salad or chicken just so I wouldn’t have a bad night and cancel plans because I didn’t sleep and sit felt crappy the morning of. And when this phobia also stemmed into being afraid of getting sick in the car, I really had to make sure I wasn’t too far away from home and someone in my family was available just in case I needed to be picked up. There was also no way I wanted someone to pick me up because then I was trapped and couldn’t leave if I felt sick. Do you have any idea why I never wanted to meet with friends? It wasn’t worth all the trouble, hassle, and battle with myself over a scenario that probably wouldn’t even happen.

I guess if you really want to understand how much power this phobia has had over my life, I’ll have to take you to the darkest part of my adulthood so far. (Yes, I am pretty sure this trumps cancer AND my amputation!)

Let me set the scene:

I was a sophomore in college. My panic attacks were waking me up in the middle of the night and for the first time, I started thinking about getting on anti-anxiety medication. Luckily, my college offered discounted mental health services but there was a catch. The only way to get to a psychiatrist was through a psychologist.  So, I guess I was going to therapy.

I wish I would have tried in therapy. However, my only goal was the quick fix. Medicine seemed a lot easier than trying to dissect and rationalize the thoughts in my brain. Eventually, I got the first drug: Mirtzapine. I have such mixed feelings about this drug looking back. It helped me eat and sleep but eventually it made me more paranoid. I gained around 60 lbs and probably was my unhappiest while on this pill. I am not sure why no doctor suggest I get off of it. Every time I would see the psychiatrist, I would tell them that the pill wasn’t working.  I was just as anxious (or maybe even more anxious) than before. So, they just kept on upping the dosage. 7.5 mg, 15 mg, 30, mg, 45 mg…I eventually stuck with the 30 mg because the 45 mg gave me headaches. However, since I wouldn’t stop complaining they would add new medicines to my regime. Ativan and Zoloft are the only ones that come to mind, but I am sure there were a few more. I would tell them that although the Mirtzapine helped me at night, I was still suffering during the day. So, their logical solution was just to give me an anti-depressant to take in the morning. To this day, I still think it’s strange to give someone two anti-depressants. They may work for others, but I am sure my brain was mega confused.

So, as my anxiety is getting worse and I am playing medicine roulette with my doctors, my husband decides to propose and throw a wedding into the mix…plus a 1,000 mile away move to Florida. Saying yes to marrying Keenan was the EASIEST decision of my life. I have loved that boy since high school and nothing has changed to this day. However, my mental state was not up to par during that time.

Somehow my grades did not suffer in college but my attendance did. Driving my car to school became almost an impossible task for me. It progressed from having break-downs as I was driving home from school and then they would happen when I got to school knowing my panic would hit at the end of the day and eventually it got to the point where I couldn’t even get into the car to go to school at all. I somehow managed to get through the fall semester of 2013 but I knew in the back of my mind that the spring semester probably wasn’t in the cards for me.

I lasted about a week in the spring semester before I had to withdraw. I refused to let my grades suffer because of my declining mental state. I could now solely focus on the wedding and the big Florida move that was to happen in a few short months.

The wedding was wonderful. I had a great time with friends and family and although I was excited about living with Keenan, I was beyond frightened to leave everything and everybody that I knew. The 16-hour drive felt like a lifetime but eventually we made it Florida. Keenan already had an apartment lined up for us and it was gorgeous! Unbeknownst to me that beautiful apartment would become my own personal prison cell.

So, if I haven’t mentioned it already, Keenan was in the Navy. And when he joined his ship, they were in the midst of preparing for an 8-month deployment. So, he was gone…A LOT. He had barely been with me in our new apartment for a month when he told me he would be leaving for about 4 weeks. I felt trapped. Without him, I would truly be alone. He had been doing everything for me. I didn’t know if I could handle him being away. It turns out…I couldn’t.

During those 4 weeks alone, the farthest I made it in the car was to go to the doctor/pick up a prescription for a UTI I was having. And that was on the first day that he left. So, for a good 28 days, I didn’t leave my apartment. I don’t think I even went outside. I had my groceries delivered to me once a week and I got so desperate that I called the ambulance for the side pain I was feeling in hopes something was wrong and Keenan would have to come back home. Thankful nothing was wrong but I was fading quickly. I honestly probably didn’t take more than 50 steps a day. I would sit on the couch, go to the bathroom, and eat food. That was it. I had no desire or motivation to do anything more. I was just a shell of a person.

Somehow, I managed to make it the four weeks and Keenan was back home. I thought I had a good 2 months to get my stuff together before he left again but the navy decided it had a different plan. He was barely home a week when they told his ship they would have to do a mini deployment to an undisclosed part of the world to do an undisclosed thing. I don’t think even the word “vague” can truly described the lack of information they gave us. There was no way I could survive on my own. I had to go back home with my family until he got back. No one knew if this deployment would last 2 weeks or 6 months.

Going back home was nice but I really didn’t change. However, one thing did change. My medication. On the last day before I had to drive back to Florida, I met with a doctor who prescribed Xanax along with another anti-depressant Lexapro. Along with the Mirtazapine, these 3 medicines made me somewhat function in Florida for the last few months before Keenan went on deployment. It was just enough to allow me to go to the grocery store by myself once a week. It wasn’t much but it was a little better than before.

Keenan left for deployment, I went back home again, and I made a drastic change. It was time to say goodbye to the Mirtzapine. This was one of the best decisions of my life. I got off that medication, started working out, and started to feel much better. The combination of Lexapro and Xanax was a winning combination for me. It made me feel normal again. It allowed me to function again. I didn’t feel (as trapped) in my body.

So, that’s the end of my story, right? Not exactly.

Surprisingly, during my cancer treatment, my anxiety was more at bay. It was when my life started turning back into a normal routine that the anxiety started back up again. My brain wasn’t being bogged down with cancer treatment; now it had time to roam into the dark places in my mind. It’s never gotten as bad as it was in Florida, but it teeters around that edge a lot.

Even to this day, I don’t touch my food. I usually wash things twice. I always have anti-anxiety/anti-nausea on me at all times. I stay away from certain foods. If a food doesn’t seem right, someone else has to try it. These are just some of the many habits that I have developed along my journey and I HATE it. And when we add a kid into the mix, it makes everything worse. I literally don’t know how I will react to Frankie having a tummy bug. To be truthfully honest with you, I don’t know if I can be there for her. I’ll make sure she is being taken care of by someone else, but I am not sure if I can be that person. I don’t want her to develop this fear. I don’t want her to be scared as much as me. I don’t want her picking up my bad habits. I am a strong and dedicated person, but this fear crumbles me. I’ll gladly tackle cancer and learn how to walk/run again and be an advocate for other amputee/cancer survivors but dealing with sickness makes me want to hide. It makes me feel defeated and beat. I hate this phobia more than anything else in this world.

This one little fear dictates so much of my life and I wish it was just as easy as saying “Well, change it!” I have lived with this for over 10 years. Yes, I can change but it will take a lot more than lifestyle changes, it takes a whole rewiring of my brain and the behaviors I have learned to cope with my fear. All of this is really a mental game with myself. It’s hard to rationalize a situation when your brain is showing you a different reality than what everyone else is seeing.

If you made it this far, congratulations! I didn’t know how long or where this post would go but here we are. I am sure this won’t be my only post on this topic, but this is definitely enough for now! Lol

That will cost you an arm and a leg.

What is it like to lose a limb?

I really don’t know how to answer that question. In a weird way, I am glad my amputation was plopped right in the middle of my chemo cycles because it helped me not dwell on losing a leg. Even though I knew from the very beginning I would be losing part of my left leg, I wasn’t given the actual date of my surgery until about 2 weeks before. I wish I could tell you that I spent my last day on two “real” legs spectacularly, but it was just an ordinary day for me. (In hindsight, I wish I would have run one more time!)

I don’t think my amputation really sunk in until about 6 weeks after my surgery. I was home from my 4th round of chemo and I was stuck on the couch. I couldn’t take walks anymore. I needed so much help with Frankie. I couldn’t even carry anything in my hands because I was always in crutches. I was getting frustrated. They didn’t even want me going and starting the leg process with my prosthetist until I was completely done with chemo. I just felt stuck. I felt helpless. It was the first time I felt defeated by cancer. I was crushing chemo and took my surgery like a champ but sitting on the couch legless is when cancer one upped me.

I guess this was the first time I showed my emotions to my family because my mom came in like superhero and found a cool contraption called an “IWalk.” It was originally made for people recovering from ankle injuries/surgeries. It’s basically like a fancy peg leg that allows you to walk AND carry stuff. It’s a crutch-less crutch.  To me, this is one of the best inventions in the world. I don’t use it as much anymore but back then that IWalk gave me back some of my independence. I remember taking walks around my parent’s neighborhood with my Iwalk on all while pushing Frankie in the stroller. I can only imagine what people thought but it was so nice being able to get out of the house again!

When chemo was finally over and I could focus on getting a prosthetic, I was super excited. I was under the false assumption that as long as I put in the effort to learn how to walk, everything would just fall right into place. However, that was not even close to the truth. I was eager to learn but I was only half of the equation. I needed a proper fitting liner and socket. Whether I liked it or not, my leg had to learn to adjust to all the new forces and sensations that a prosthetic leg can bring.

I would be lying to you if I said I didn’t get mad and upset that walking did not come easy to me anymore. It took a grueling 3 months for me to finally feel comfortable enough to wear my leg all day. It took a few different liners and sockets along with the right combinations of socks to get to a semi-normal place again. At that time, I was also going to physical therapy twice a week. I was working on my gait and more technical things like jumping. Honestly, going to physical therapy was one of my favorite things. It made me feel so accomplished. I was gaining back everything cancer had taken from me.

There are some days that I wish I could have my leg back, but those days are few and far between. I get the occasional phantom pain (which, for me, is like a jolt of electricity going through my residual limb) but it usually passes pretty quick. I don’t know if it’s because I am writing about my foot, but currently I can feel the ghost of my left foot. It’s a strange sensation to feel something in your body but your brain understanding it Is not truly there. I really think I am the lucky ones because some people have pain for the rest of their lives after their amputation. I am happy to say that I take no pain meds. I have no need for them.

Let just preface this by saying that I appreciate people calling me an inspiration, however, I am not sure I am one. Throwing on my prosthetic in the morning is just normal for me now. I obviously can’t change it, so I just chose to embrace it. And just like cancer, losing a leg made me appreciate mobility. I always want to be active and moving because I have the ability, some people aren’t that lucky. Walking is truly a gift and we shouldn’t take it for granted.  

Cancer made me…happier?

I feel like I have gone through my cancer story with so many people over the past year and a half, but I only tell them the facts. I say when I was diagnosed, what my treatment plan was, how long it took for my hair to grow back and so on and so forth. However, the one thing I feel like I haven’t shared with people is the emotional side of my journey. This is the much more vulnerable and less talked about side of cancer. How does someone even ask how a cancer patient is doing? I even struggle with this. I visited a sarcoma patient who was starting his own journey about a year ago and even though I sat in the very SAME chair as he was, I really didn’t know what to say. “You’ve got this?” Every cancer patient is so different that it’s hard to gauge what is helpful. I wanted to remain positive and keep everything light-hearted, but I don’t blame the people that get sad and upset. No matter what age you are, it is sobering news to hear that you have cancer. In my particular case, I had a 6-week-old daughter when they told me the news. I had finished up college a few months before that. I was ready to start my life with my new family and hopefully get a career going but everything was put drastically on hold.

I can honestly say I didn’t wallow in the news. I had a good cry the day I was diagnosed and then it was time to fight. It was time for me to make sure I was here for my daughter. However, even though I remained positive and light-hearted throughout my journey, I was very scared. I mean I would be lying if I say I didn’t think about death. Although there are much better rates for survival in today’s society, when most people think of cancer their minds instantly go to death. I mean that’s what I did as well. It seems like people only remember the tragic stories…

I would say that my chemo was a little atypical from what most cancer patients go through. Many go in for an infusion for a few hours a day every couple of weeks, but I was inpatient for 5 days every three weeks until my six rounds were over.  One of the IV bags I had ran for 5 days straight. (I really hated that bag on my last day of chemo because it felt like it was never done!) To be completely honest, the hospital was absolutely boring and the food was extremely disgusting. During my last three chemo, I only had one leg, so I felt even more confined in my hospital bed.

However, even though I was “sick,” I never really felt that way. I did my 5 days in the hospital and usually within 48 hours I was back into the swing of my normal life outside the hospital. I know I was one of the lucky ones. I have heard horror stories of the side effects of chemo. Mouth sores, chemo brain, nausea, and the list can go on and on but aside from not feeling like eating or drinking during the last few days of chemo and after chemo, I really felt the same. And I have to say that not feeling different is the part that unnerved me. Sometimes I would even wonder if the chemo was even working with how basically “normal” I felt but everything worked out in the end!

The worst part of cancer may not be actually having it; it may be when you’ve fought the beast and return to normal life with scans every three months looming in the shadows. When I was first diagnosed, I never lived like I had death on my shoulder but now I do. I shudder when those quickest three months roll around and I am lying in front of that CT machine. I still think it’s cruel to make patients wait days for results. Results that literally make or break your future. I want to be there for other cancer patients, but I also want to remove myself from the community. It’s a loving community with some amazing people but it reminds me of a place I don’t want to be again. However, I try to shake off that feeling because I hope to inspire people with my story. I want to show people you can rise above a bleak cancer diagnosis and thrive. I can probably say that I live a more fulfilled and happier life than ever…all thanks to dumb, old cancer.  

Short Introduction

Hey guys! My name is Marisa Cogswell and I am currently 26 years old. My husband, Keenan, and I have been married for 5 years and have an almost 2 year old daughter. We are also “parents” to our two Boston Terriers, Monica and Phoebe. (Yes, it is Friends inspired!) I have been told by many that I have a unique story to share with the world and if I can help any other cancer survivor, amputee, or mom…I plan on doing so. I’ll go much more in-depth about my story in the upcoming post. So, stay tuned!