Tag Archives: surviorship

Looking Good When Your Body Doesn’t Feel It – A Survivor’s Story

This is a guest blog post by Heather Von St. James, a Mesothelioma survivor.

heather-survivor

The beauty business can be wonderful, hard, lovely, and shallow all at once. But this was the career I had chosen, and I loved it. I specialized in cutting and color, but could do pretty much any salon service from pedicures to brow waxing. I had even done a body treatment or two when we were in a pinch.

I loved my job. I loved taking care of people and making them look and feel their best. I had a passion about my career that was contagious – and my clients loved it. I took great pride in having fun and colorful hair, on point makeup and stylish shoes. This was after all, and industry built on appearances.

I was part of this world for over 10 years when the cancer was diagnosed. I found out I had cancer just 3½ months after the birth of my only child. The pregnancy was incredibly easy. I had very little morning sickness, only gained 5 lbs. the whole time. The only problem was I was beyond tired. I had never been pregnant before and had heard fatigue was par for the course, so I didn’t think anything was amiss. Quite the opposite actually.

People always told me how good I looked. They said things like, “If I saw you from the back, I would never know you were even pregnant!” So I took it as a compliment that I hadn’t gained the weight that I thought I would. The only complication was Lily, my daughter ended up being a frank breech. I had to have an emergency C –section, but she came into the world a healthy 8 lbs., 14 oz.

After having Lily, I started losing even more weight, up to 5 lbs. a week. I chalked it up to breastfeeding and working full time. People always commented on how good I was looking, and that being a new mom sure agreed with me. I was the thinnest I had been in years! But the trouble was, I felt terrible. I was exhausted, I was having trouble sleeping, and I was having trouble breathing.

I just thought this is what postpartum was. I didn’t have anything to compare it to, so I just powered through.

Finally after 3 months of feeling worse and worse, and having more troubling symptoms, I went to see my doctor. After a series of scans and tests we had our answer: malignant pleural mesothelioma.

I was in shock. All at once, my world had come to a screeching halt. My life went from being a working mom, to medical appointments and scans. I would spend the next year fighting for my life through surgical intervention to rid my body of the cancer, followed by chemotherapy and radiation.

I was sicker than I had ever been in my life. I made my mind up early, though, that even though I was sick, I was still going to do my best to take care of myself. I figured, you can take the girl out of the salon, but you can’t take the salon out of the girl! Just because I had cancer didn’t mean I was going to stop caring how I looked. I was platinum blonde when I got sick, so I decided to dye my hair a darker brown, closer to my natural color, so it would be easy to deal with over the next few months. I figured it was only a matter of time before I lost it all due to chemo anyway, so why not have fun.

I found out later, that not all chemo causes hair loss, and the type I was getting happened to be one of them, so I never did lose my hair. What was sad, was one of my former co-workers accused me of faking cancer because I didn’t lose my hair. She seriously said that I probably was making everything up because “everyone knows you lose your hair with chemo.” All I could do was laugh and shake my head.

I found that many people said some really crazy things during my cancer battle. People would ask how I felt or how I was doing, and when I said the truth, basically I felt terrible, or was the most sick as I ever had been, I always got the same response. “But you LOOK good.” It was as if looking good made everything ok. And it meant that since I “looked,” good I obviously could not feel as bad as I said.

I began to wonder what I was SUPPOSED to look like… I guess I was supposed to be bald, not wear any make up, spend all my time in pajamas, and moan aloud all the time. I honestly think that is what many people expected, and when they saw me with my hair and makeup done, and dressed in normal clothes, it surprised them. I made every effort during my treatment to make sure I took the time to do those things. The truth of the matter was it made me feel better.

Being a cancer patient, you desperately want any sense of normalcy because everything is so NOT normal… for me? Taking care of myself and my appearance made me feel better. I wore normal clothes, not sweats or pajamas, unless I was in bed. I even got dressed up to go to chemo. I Joked that even though, I might be sick, I’ll be damned if I would look that way!

I was the only person I ever knew who wore red lipstick to get a blood transfusion. My elderly mother-in-law often took me to my chemo appointments, and all the nurses assumed I was there to accompany her for an appointment, not the other way around. I don’t think I’ll ever forget the looks of surprise, replaced by pity when they realized I was the one there for the infusion.

Over the last 10 years, I’ve learned that people don’t say these things to be cruel or unkind, quite the opposite actually. I believe they are trying to encourage, not disparage. I’ve learned to let the comments roll off, and instead of getting upset I try to educate, and I’ve learned myself what not to say to others who have gone through treatment.

I still care about my appearance. I have a shocking white blonde mohawk that has become my trademark. I like to make sure I look nice when I go places, not for other people, but for myself. When I talk to people I don’t know, they are always shocked when I tell them all I’ve been through. My scars are not visible unless I show you where they are.

You can’t tell from my appearance that I have only one lung or only part of a diaphragm. I’ve gained some of the weight back I lost during treatment, so it isn’t obvious what happened to my body as a result of the cancer – which is why when people still say, “Wow! But you LOOK so good!” I just smile and say, “Thank you.”