One Year Ago...

Today is my one year "Cancerversary". One year ago today my dermatologist called to tell me the pathology results of my mole removal. 

Cancer. But it didn't scare me or freak me out until she started talking about surgeries and oncology. I hadn't yet learned the nasty kind of cancer I had, but I would learn.

It's a been a year full of trials, fear, surgeries (4 of them), some pain, and uncertainty, but it's also been a year of love, strength, and blessings. The best thing about having cancer is that everyone who knows you expresses to you how much they love and care about you, and it lifts you up so high, I swear you can almost fly. It's overwhelming. It's like having a warm blanket wrapped around you.

I've learned alot this year about those who care about me, most all good, but one or two people bad. But the most important thing I've realized is how strong I am. This was my gold medal year. I'd never had a single surgery or broken bone or an overnight hospital stay in my life. I was terrified. Now? Another surgery? Bring it. It doesn't scare me anymore. 

Cancer has taught me the person I can rely on the most.... is me, and that has been worth the journey.

Here's to (hopefully) another year NED. 

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.

Everything.

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.

This is MELANOMA.

Holding Fast

I went through a bit of a bad time last month, but I'm doing better now. It seemed like right around the end of the year so many melanoma people passed away and it really freaked me out. Everyone says don't pay attention to the bad results, concentrate on the people that are NED and healthy, but that's easier said than done. I'm human, and I have a heart. I also have a deadly disease that might kill me, or it might not. But I know the facts. I try to take the good with the bad, reminding myself that those are worst case scenarios, but I have my weak moments, as everyone does.

I had my 3 month body check at the dermatologist last week, and it was great to have Deni with me for moral support. Usually they take me straight back to the surgical room, what I call the "Melanoma Suite", but apparently there was another Melanoma patient in there. I had this strong urge to ask to see him and offer my support, but they said he was 4 yrs NED so I thought he must be doing pretty well. 

They put me in a regular exam room and I was examined by two different docs, the first was my derm's intern, then my derm came in. I like her so much because she always remembers me, she always gives me info that my oncologist never does, and she's always totally honest with me. 

The good news is that my body check was fine, no biopsies needed. That's 6 months now with no biopsies and that's a great record. She examined my scars and my lymph nodes, making sure there was no nodules or swelling. I had a little swelling on my left armpit lymph node, but she said it was probably glandular. Then she mentioned the clinical trials again and asked if I was still interested in going to Moffitt in Tampa. I tried to explain to her again about my family situation, how I have no car, no money, etc. and how it would be too stressful on my family. She suggested that the Yervoy trial should be available in Gainesville now, and I should ask my oncologist about it. Also a new drug Zelboraf has just been proven to extend survival for stage 3's so I want to ask him about that too. 

My PET/CT scans aren't until May 1st, and my oncologist isn't until May 14th. That's two weeks I'll have to wait to get my scan results. Most of my Melanoma friends get theirs the same day or within a day or two. I don't know why mine make me wait so long, except for the fact that he's not a Melanoma oncologist and doesn't have alot of experience with how stressed we get at scan time. I did ask my dermatologist if I could see a Melanoma Oncologist instead of my regular one, and she said the one I'm seeing is the only one in Gainesville that has any experience at all with Melanoma. So I'm stuck with him. I wish I lived near a place like Sloan Kettering where I'd get the best specialists in the country. 

Mom usually goes with me to everything but this time she won't be able to be there for my scans or my oncologist appointment. She is having knee replacement surgery right around the time of my scans so she will be out of commission for a while. I was going to have Deni with me at my scans but I don't think she can handle sitting there for 2-3 hours so I may have to just drive myself. I wish I had someone that could go with me. At least Deni can come to my onc appt. 

After my dermatologist appt, I told mom about my derm saying I might be able to still get into a clinical trial but I'd have to at least go to Tampa for an initial meeting at Moffit, and her reaction was "I just can't take on that kind of responsibility". I assured her that I wasn't going to do it because I knew it would put too much stress on her and my dad. But a part of me was feeling stung.. again. Hurt. I know people that have Melanoma, and their parents move heaven and earth to get them ANY treatment they can. I know my parents are in their 70's and I would have to use their car. I know gas is crazy expensive, and my dad would bitch about money, and wear and tear on the car. My mom tells me I'm special and to think positive and that she doesn't think I need to do any trials or therapies. I love my mom more than I can say, and I know... no matter what... that she loves me. But sometimes....sometimes I hurt. This is my life. If I ever advance to stage 4, will she say it's too much stress for me to get chemo? Will she tell me to just think positive? Or will she hate herself for telling me just "think positive" right now? 

To Deni's credit, she said she would "work the phones" with the American Cancer Society to try and get me into a trial somewhere, but I swear it's too late now. The last time I contacted Moffit they said it had been too long since my last surgery, yet my derm tells me it's not too late. I don't know what to do. I guess I'll just keep the peace like I have been doing and just wait and hope I stay NED for a long time. It would cause so much upheaval in my family and for my mom. I would do anything for my mom, even put my own life at risk.

Just scared

It's been 10 months since I was diagnosed with cancer. You'd think it would get easier and easier to put it out of my mind and go on with my life, especially since I'm clear for the moment. But that's not the case. As my friend Chelsea said in her own cancer blog "Those of us with Melanoma live in 3-6 month increments, from scan to scan". So true. My own time is getting close to another full body check and possible biopsies with my dermatologist, and my own review with my oncologist. My scans are in 6 month increments. You would think 6 months would be plenty long enough to put it out of my mind after scan time, but as time is going on, I'm learning more about this type of cancer, and I'm seeing more and more Melanoma warriors die. Give me a surgery... I can do that. Scans are a piece of cake. Even biopsies I can handle, but give me this knowledge of how brutal Melanoma is... how it hides...give me the seeing people die every day.... I'm not handling it. Maybe my sister is right: maybe I do need to talk to someone.

It was bad right after the new year when Randi died, and I thought I'd try and distance myself emotionally from the Melanoma stuff for a bit, but then Samantha Channels died, and I'm seeing other friends online fighting such heartbreaking battles, and it's killing my heart. It's gotten so bad that I had a nightmare the other night that I had advanced to stage 4, was seriously ill, and I was telling my family goodbye.

No one else understands that doesn't have Melanoma. They don't realize how deadly it is, how sneaky, how it hides. Instead they tell you things like "you have a %50-50 chance and that goes for everyone", or "If you only think about the negative, that's all that will happen to you", or "You're clear, why do you keep dwelling on it? You could be hit by a bus tomorrow. Just get on with your life". 


Tell that to Randi. Tell that to Samantha. Tell that to everyone in treatment, in the hospital, in hospice. For those of us with Melanoma, we know that the odds are NOT in our favor. You might get hit by a bus tomorrow, but we have a deadly disease that most people don't even realize how deadly it is. They just think it's skin cancer, it's gone, you're fine.


Well I'm not fine. I'm not DOING fine. 


I'm terrified, and I can't share this with my family because then THEY would be terrified for me and I don't want to cause them this pain. 


In two months it will be my one year Cancerversary, and guess what? 


It's NOT over. It will NEVER be over.... until it comes back. And the odds are that it will.

Conflicted

How do you say goodbye to a year that has both blessed and cursed you? How do you welcome in a New Year with all the promise it brings while you live in fear of more health problems, and while you watch while people with your kind of cancer drop away?

I am conflicted this New Year's Eve.

This last year has brought about more tears and challenges than I would have ever expected, but while I was hanging on during the storm of cancer surgeries, I was also being blessed by many things, too. My family worrying about me, complete strangers telling me they would pray for me, my friends online and IRL letting me know they were here if I needed them, gifts I was sent, just the complete outpouring of love. One other great blessing I learned is that whatever happens to me, I'll get through. I'm not the wuss that I was.

I'm stronger than I thought I was.

While this knowledge does make a difference in the way I view things now, it still can't shield me completely when people still get diagnosed with this cancer, when friends struggle through their own cancer journies, when friends...die...from this cancer.

When I wonder if it will come back, and when...where in my body...how long will I fight...

Welcome to Cancer-Land, it's a whole other country.

My sister today suggested that I get therapy to help me deal with all that happened this year, and all that could happen. I didn't take it as an insult because we've both been through therapy, but I'm wondering if that's what I really need. Isn't this a normal reaction when one has a serious illness? Sometimes it feels like people want to rush me through this year, through this cancer. Yes, I'm in remission, yes it may not come back for years and years, but I have to make this journey at my own pace. Just because it's over for YOU doesn't mean it's over for ME. It probably won't be totally over...EVER. Because my kind of cancer has no cure, and I know that. It hides, sometimes for years, but most of the time it comes back. I've resigned myself to that, but I don't want to think about it constantly.

I'm so scared. I'm so happy. I want to cry. I want to celebrate.

I'm so conflicted.

I guess it's not impossible to cry AND laugh at the same time, I know I've done it before. maybe that's what I need to do...both.

Cry for the people lost this year, cry for the pain of loved ones mourning, cry for all the heartache that may come in the new year, but laugh at all the funny moments this year, all the love shown to me, all the victories of getting through every single surgery like a trooper.

2011 you will ALWAYS be remembered, for the good as well as the bad.

2012 I won't ask for much, just let me live and enjoy every minute. Let me laugh, let me show love to others, let me feel the sun on my face without fear.

And if anything bad should happen...

Let me FIGHT.

RIP Randi... a true warrior

We lost another warrior yesterday, Randi from Randi's Journey with Melanoma . I had no idea she was that bad, but that's probably because of her upbeat attitude. Everytime this happens it inspires me, but it scares the hell out of me, too. But mostly I'm just really, really sad. I hate this cancer.

New Pics

Here are a few new pics that I've gotten and/or taken of my journey so far.

 This is my first scar, after the initial mole removal done in March 2011. It was small, 8 stitches, but it was a big deal for me. They did it in the derm's office and later called me on the phone to break the bad news that I had cancer,

 This is me in Pre-op. I think this was my 4th and final surgery so far to remove the tumor behind my knee. (That one turned out to be benign). Mom took this pic and I'm giving her the look "You better not be taking my picture, mom!".

This at the dermatologist in October for two removals and biopsies. I was getting to be a pro at the whole medical thing by this point.

The procedure room at the dermatologist, or as mom likes to call it, "The Melanoma Room".

My main scar where it all began, right above my cleavage. It's faded a bit, but you can still see how large it was. For some reason they decided to do only internal stitches and used derma bond on the outside, so my incision started to pull downward due to my boobages. I could have had surgery later to make the scar prettier but I refused it. Let's face it, I'm no beauty queen anyways.

A closer view. I wish I had taken more images during my journey, but I think I was just so numb from having cancer that all I could think of was the next scan or the next surgery. But I think it's important to share our images and stories so that others can benefit from our experiences... if they choose to.