Living with Melanoma

A little over a year ago, I wrote a post about Melanoma and the importance of checking your skin and wearing sunscreen, and it is still as important as ever. I wanted to continue my story, because it isn’t over yet.

In February, I had a recurrence of my cancer. We (well, the highly educated surgeons) attempted to remove the lymph nodes but they were “intimately” wrapped around some very important veins in my leg. I then went through a couple of hospital stays for a horrible drug treatment called IL-2. Sadly, it wasn’t very successful, so I’m now on a drug called Zelboraf.

The hardest thing about having cancer [thus far] is the uncertainty, the unknown that floats above my head like a dark rain cloud over a single character in a comic strip.

Of course, there are statistics and numbers and percentages. Numbers that show what medications and treatments work, what doesn’t and for how long. Numbers that are supposed to give a patient some sort of hope, something to grasp on to. Those numbers don’t really mean anything when you’re in the midst of fighting a terrible disease. It’s the same with stages. I, II, III, IV…who really cares? People think, “Oh, stage I, it’s not that bad”, as often as they think “Oh, Stage IV? Poor thing.” Both are irrelevant in the grand scheme of things.

It turns out that being a cancer patient is very similar to being a parent: people can tell you all about the ups and downs, but until you live it, you really just don’t know all of the little things. Sure, they tell you what meds to take, the side effects, things you can do, but they never tell you how to actually live with cancer.

No one tells you how to fit your doctor appointments into your daily life, how to explain to your children that your joint pain and blisters are because of a medication that is supposedly and ideally going to save your life.

No one tells you how to handle your inability to go places or do things because of medication side effects or hospital stays.

No one tells you how to handle the guilt from not being able to go places or do fun things with your kids.

No one tells you how to fit cancer into your life.

I never wanted my melanoma to take over my life. When I found out it had come back almost 3 years after my initial diagnosis, I decided it was just something I had to deal with again. I’ve tried to keep it from defining me.

Lately, however, it is with me all the time. In my limp as I shuffle to get moving, in the fold of the fingers of my claw hand, in the blisters from an accidental sunburn. It’s in the reasons I have to give my kids about why I can’t go bowling (joint pain) or take them to the zoo or the water park (sun is scary!). It’s why I can’t have a glass of wine after a particularly difficult day. It’s why I don’t sleep well and why I have to be strategic about planning my days.

It’s also why my oncologist can give me a hard time about my whining and sign his emails with his first name. Why I know exactly where to go, how long it will take and how much it will cost for parking for each visit. It’s why I know which phlebotomists are the best and which to avoid. It’s why I know that too much Advil will hurt my liver, why I have three different prescriptions for nausea, one for anxiety and one for pain. It’s how I’ve learned to listen to my body and pay attention to things I always took for granted.

I’m not thankful for cancer, but I have learned to slow down a little bit and enjoy the moments more. I appreciate pain free days and understand a little more about what people with chronic pain go through.

I am not my melanoma, but it has become a much larger part of my life than I ever thought it would when I first saw that mole on my leg.

So I keep laughing and learning as I go. If I couldn’t find the humor or silver lining in this, I would most certainly be writing this in crayon from a room with padded walls. I’m lucky to have an amazing husband and supportive and helpful family and friends. I’m lucky that I’m not alone. I’m lucky that when I talk about the sunburn blisters I have that I can say, “Well, at least it’s not The Rash” (an expected side effect) with a smile and get a laugh from my husband. I still laugh while I take my morning pain inventory – every day is a different pain! Wheee! I’m lucky I can still laugh through it all.

Dawn is a melanoma survivor who authors the blog PGoodness, as well as chronicling her journey through skin cancer at the site, Defying Melanoma. You can also find her on twitter.