Let me get one thing straight: I do not post stuff about my melanoma to garner sympathy or to dwell on all I went through, I only post out of obligation to keep a dialogue of awareness amongst all who will listen, and think about their skin. When I was diagnosed I still didn't believe that melanoma could actually kill me, and I believed that because I was young I was immune to death, and I felt like most people thought the same way about the disease, which scared me into wanting to raise awareness. I did what I wanted to do, and felt like I made my difference, and to be honest it's hard to stay active when all you want to do is just move on, forget a little about it all, be "normal" again. Which I never will be but that's ok. Either way, at least once a year I will share bits of my year and a half experience with actively fighting the illness with surgery and treatment, and hopefully my experience is enough to scare other young people out of using tanning beds or baking in the sun without SPF. Yes, I'm trying to scare people out of those habits, because I've noticed that you can "raise awareness" but if you don't also "raise fear" people are less likely to stop tanning.
I like these four pictures because they say a lot of the physical side of melanoma. Surgery. Nurses. Tubes. Blood. Sores. Pain. Melanoma hurt. There was a lot of physical hell during that year and a half. My body had turned against me, and living in it was utter hell. After my surgery I came down with lymphedema, which is a buildup of fluid in a limb, in my case my leg. I didn't walk normally for almost 6 months after, and in my dreams sometimes I still limp. It's amazing that the body can return to almost normal with time and healing, and all that is left is the scars to remind you.
Melanoma hurt. I remember the second week of treatment, I had every weekend off so Saturday came and I wanted to join some friends at a movie at west ed. I got out of the vehicle at the mall and my legs crumpled beneath me, I felt like a marionette. I could not stand on my own. I went home, feeling defeated, feeling like I was dying, like I couldn't even keep my eyes open and wondered if they would ever open again. I wondered how I was going to get through a year of this medicine that might improve my chances of survival. I wondered who I was going to become as a result of this, and who I was going to be now while in the haze of this illness. I felt like I was trapped inside of a shell. The reality of what I was going through hit me just then.
I got sicker and sicker that weekend, and it went beyond the typical side effects for the drug. I truly felt like I was going to die. Every second felt like agony and my body was angry. So tired, I slept all the way trough that weekend.
Monday comes and I go to the cross cancer institute to see my oncologist. I saw him every Monday for months. Mondays are clinic day, so the halls are filled with sick people waiting to see their doc. It's the worst place in the world to me. I remember feeling so horrible I considered asking for a wheelchair because walking was hard, both from lymphedema and just general weakness from the drugs, but I didn't, because one thing I hate is looking like a pussy. Ha.
I got my blood checked and they told me keep up the water but they'd delay my next infusion until they saw my lab results, so go home a while. I remember my dad picking me up, going to my parents and my brother was there, and I lay on the couch while they ate lunch, and I may have had one or two bites. Then a while later the cross called me and said that I had zero liver enzymes and zero white blood cell count, so I was really very ill. Take a week off they said, and next week we will resume at half the dose.
I found out later that this dose they were giving me was the same they start everyone at, no matter if you're 350 pounds or 100. I'm quite certain you could kill a horse at that dose for a month or two, it was that awful.
That week off was really hard. I decided I might quit. I couldn't see myself doing any more of that. It was just too much. I spoke with someone who did interferon the whole year, and it sounded bad, but also thought, maybe I'm speaking to this man now because he did the whole year... What if I quit and then die next year?
Obviously I had to suck it up though, because showing weakness doesn't work for me. I didn't want to have any regrets. I haven't gotten anywhere in life by quitting, and hiding. So I did it, and over the course of the year I became used to being sick, so I got a little more normal in that I just went on, and if I felt really bad I just went home and slept. But lying around sick got old, and I was bored, and still only 27/28 years old, I had a life to live. I had to get up and out even if my body wanted to stay on the couch.
I don't feel like a hero for what I went through, it was something that happened to me out of circumstance, family genetics, and just some kind of fucked up "luck." I had been a bit of a hypochondriac since high school, a closet one, where I didn't really share that I feared I would get cancer, any kind of cancer, the one I dwelled on was actually lymphoma! I know that sounds nuts now. I spent years on and off thinking that I had to have lymphoma because I was tired, and had swollen glands, a cold that wouldn't go away, ect. Well it hit me one night, looking at my mole that ended up being malignant, I looked at the mole and felt nauseous. There's something very wrong with this mole and me. I didn't feel sick but I didn't feel right. Something had changed, something was off, my insides felt heavy. They felt burdened. I had to go to the doctor.
One lesson I learned the hard way having melanoma was that we must all be our own advocates for our own bodies. No one knows your body better than you. The doctor I saw for the mole looked at it and said "it's a little ugly but I wouldn't be concerned about it" he said he would refer me to a dermatologist to remove it, if that's what I wanted. I remember his lack of concern.
I ended up waiting two weeks and calling three times to make sure they put through a referral. The nurses at this clinic had to remind doctor idiot. Finally I got an appointment but couldn't believe it- I had to wait two months to get this mole off.
I didn't think it was right, but I didn't do anything about it either. I was still naive about doctors and thought, well he's the expert. They wouldn't just let me die... Would they?
The day came and I sat in the dermatologists office really just thinking, ok, everything is ok, you are feeling fine, you're not dying, this might be a superficial skin cancer but it's "probably not" melanoma. This was my denial working at full capacity. I spent those two months in full denial. If I wasn't being rushed to the mole man, I must be ok.
Well only a few days later, 5 to be exact, on December 15th 2010 I got the call and my life has not been the same since. It was eerie, it was shocking, I didn't know what to do with that news. I went to work after I got the phone call. My ears were ringing all day. It was as if I had just been propelled into a dream world, where I was literally hovering over my body, pensive and feeling a dark force beyond my control looming. Overall, the loss of control is what is hardest. Your body controls you when you are sick. And that is a very scary thing.
Looking back, as my own advocate I SHOULD have pushed for a faster referral. I SHOULD have sought out a second opinion. I SHOULD have, but I didn't, and I don't live regretting those choices but I sure have learned from them. One thing I've learned is that the doctor is not god, he is not all seeing and all knowing. They COULD leave you to die. If you don't fight for your own life you could lose it. My oncologist later told me that the doctor I saw SHOULD have and COULD have gotten me an appointment sooner, because as doctors they are obligated to care, and if the patient is concerned, they should be too. I learned that I must always fight for my own body, and if something isn't right I must make it right on my own. And it's ok to tell the doctor, no, there IS something wrong.
Is it funny that after all this shit, pain, sickness, and utter misery I wouldn't take it back? I know people say that sometimes but don't totally mean it, but I do mean it. I just couldn't take it back because I love myself more than I ever did before all the craziness. I see things in a way that others just can't, after facing death head on everything changes. I no longer have bad days. I have days that didn't go my way, that were frustrating, or just weren't awesome, but no bad days. None. Why would I have bad days? I have days! That's all that matters to me. I have less physical issues than I thought I would, and that makes me thankful. I notice the shape of snowflakes. I notice the size of the moon. I see the difference a little kindness makes. I get to see my niece smile and hold her in my arms, and hear her call me auntie. I get the love and affection from my amazing man, best friends and loving family, and feel true unwavering support. Being a part of life, that's all I want, and I appreciate every single second of it.
-E.
