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.  

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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.