Monday, March 5, 2012

This daily hell

I was driving to the store today and I was looking around at the green grass and the trees as they went by, thinking wow, what a nice day. I was also thinking of someone that just died from Melanoma in the past 24 hrs. It wasn't someone I knew personally, but every time someone dies of this cancer it's like a punch to the gut. But I was also thinking, that person will never see the trees again, or the green grass with the sun shining down on it. They'll never see another sunset, never breathe the air, never hear music... and it made me ask questions.

Why? Why her? Why now? 

And, of course, the ultimate question... When will it be my time?

I know, we all die. We each have our own time, but most people go on with their happy little lives not thinking about their own mortality. Therapists tell us that we have to not think about it or else we'd drive ourselves crazy. That should tell you something about people with Melanoma. We never get a day off, it's always there. So yeah, I guess we're all a little crazy.

Have I faced my own mortality? You bet I have. Ask anyone with Melanoma and they will answer you the same. We have to, we don't have a choice. We are walking around with a ticking time bomb inside us, with no idea of when it will go off. 

I keep trying to explain to my friends and loved ones how Melanoma is different from other cancers. I can't blame people for not knowing about it, I didn't know either before I was diagnosed. Even when the dermatologist called me on the phone and told me I had Melanoma, I still didn't totally understand. It wasn't that shock of dropping the phone in agony. It was more of a slowly dawning horror. Each time they said I had to have another surgery, and then when I had to make an appointment with an oncologist... then it started to get real. The final understanding came when my surgeon talked to me about mortality and survival rates, and as soon as she left the room, my mom and I both burst into tears. 

My big goal at that point was to get through the surgeries and any kind of therapy that came afterwards. But once the surgeries were done and there was no further therapy, I just concentrated on healing and recovery. Once I healed, and everyone around me breathed a big sigh of relief, then the real lesson began. I really started learning what kind of cancer I have. 

You just can't get it through some people's heads how Melanoma hides in your body, how there is NO CURE, how you will have it for the rest of what remains of your life. It can come back anytime, and if and when it does, it usually comes back to kill. I'm so tired of people telling me to think positive, that everyone dies, that I have to get on with my life. 

Let me strap a bomb to your chest, and tell you it will go off sometime, you'll never know when, but until then, you HAVE to get on with your life and pretend it doesn't exist. Let's see how well you handle it. 

Other kinds of cancers (not all, I know) usually have a date... two years, or five years cancer-free at which point the doctors consider you cured. My mom had ovarian cancer back in 1985 but it was a tumor and once removed, she was fine. Or course, she thinks if I can make it two or five years with no Melanoma recurrence, then I'll be fine. Even my primary doctor told me if it doesn't come back in two years, it probably won't. He, obviously, knows nothing about Melanoma. 

My family asks me, why are you so adamant about this? It's almost like you WANT it to come back, like you are willing it to happen to you. Why are you so interested in doing a clinical trial when you're doing fine now? Do you WANT to have side effects and get sick? Why can't you leave enough alone? Stop obsessing over it, you're going to make it happen. You have to think positive and move on. 

Melanoma doesn't give a rat's ass if you think positive. No, I DON'T want it to come back. No I DON'T want to be sick. What I DO want is understanding of the HELL I go through EVERY SINGLE DAY because of this damn black beast. What I DO want is for my family to prepare themselves just like I am doing, just in case. I want them to stop living in denial. If *I* can face this honestly, why can't they?

I know. Because they love me. Because the thought of losing me is too much. I'm thankful that I have loved ones that love me that much, but at the same time, I need them to understand that my life is not what it used to be. Everything has changed.


I can't even remember what it was like before Melanoma. Without the ticking time bomb. I'm not the same person I was. I'm not going to handle things the same way. My outlook on life has been turned upside down. 

I have and still am coming to terms with my own mortality. 

I saw a video online yesterday from the Dana Farber Institute about fear of recurrence of cancer. It was interesting in that they said certain things can be triggers for your fear. For example, people getting diagnosed with your specific cancer, or people dying of it. They actually made a good suggestion to deal with it. They said one of the things you can do is try to avoid those triggers, but if you can't, then do good things for yourself. Watch a movie that is silly and stupid and makes you laugh. Buy yourself something. Do something you really enjoy. 

I thought that was great advice. When I was going through my surgeries and recoveries, I bought all the Stargate Atlantis and Stargate SG-1 DVDs and watched them everyday. They were my "happy place". So I guess what I need (besides my xanax) is more "happy places" to go to. I think that's something all of us with this black beast need to find.

Meanwhile, the bomb keeps ticking, and I keep beating my hands against a glass wall trying to get people to understand....

This is a daily mental hell.



  1. Tell you Dr. Mine came back on my liver after 18 years. I thank God for those 18 years. I thought I was ok. They released me after 5 years and thought I was ok. Have been in a battle for my life since May 2010. 25 IL-2 and 4 Yervoy treatment. We will win this battle with this beast (melanoma) you are in my prayers. Psalm 91:11

  2. Becca
    I really can relate to just about everything you wrote about in this post. Unfortunately we don’t get instruction manuals the day we are diagnosed. We roll out of the sack every day and do the best we can. Your thoughts and rears sound normal to me for whatever that is worth. Time seems to make it better for me. I think we adjust/cope a little better every day but we don’t recognize this gradual progress. It helps me to think in bigger blocks of time. I am better today than I was 90 days ago for example. Keep up the great work on the blog. I love hearing that I am not along in my thoughts and fears.

  3. Thank you! I feel the same. The first time at my doctor , her first words was Melanoma I will give you 6 mo. . But now let see we can do something about that ! I'm doing ok right now, but like you I can' t get away from it. It could come back at anytime . And no one understand (family).

  4. Hi Becca, I can relate to much of what you said, I am a melanoma survivor, having had my first 6 month check just yesterday. (clear for the moment)
    When I related the news of the "all clear" check, I can see and 'feel' peoples relief but I can also feel a kind of dismissal, you know (she's right now) So, you get the gist and I get yours, and I love you for your courage and your fight and your ability to still find the joys in life. I'm not a religious person as such but for what it's worth "my" prayers are with you. I have only recently started a blog, mainly for fun and it is a great help for me (somewhere for me to retreat and be the lively fun person that I still feel to be) but I have not shared any of my melanoma trials on it.
    Thinking of you across thousands and thousands of miles.