Life Isn't Fair, Neither Is Melanoma

I have a friend named Susan. I met her through the Bad Ass Melanoma Warriors group on Facebook. I've never met her in person, but she's been a friend for over a year. I've helped her design a few things for Melanoma Awareness, and she's always been there for me and others when we need a virtual hug, or a shoulder to cry on. 

Susan has four kids, one of them is a 23 year old daughter named Jillian. A few years ago Jillian was diagnosed with Melanoma from a mole on her back. Just a mole, something so small. From that small mole, Melanoma spread throughout Jilly's body. At one point it was in her liver so she had half of her liver removed. Now it is in her brain. She's tried numerous therapies and treatments, chemo, everything that modern medicine can try. Susan has been by her side as any good mother would, while still being an advocate in our Facebook community for Melanoma Awareness. She designed t-shirt to wear at walks to raise money for research, and she bought several billboards throughout Michigan and North Carolina. She has a non profit called Jilly's Jems to raise money.

We call Susan "Mama Bear". She is a Mama Bear for her family, her daughter, and for every one of us with this horrible cancer.

Two nights ago this Mama Bear sat next to her daughter's hospital bed and listened while the doctors told her they were out of options. They had tried everything but the tumors keep growing. They suggested Susan take her daughter home and call Hospice.

A few hours later Susan broke the news to our Facebook group. I think I can speak for others when I say we all took it like a knife to the heart, and the tears began to overflow. The only thing I kept thinking was "it's not fair" over and over. She's 23, for God's sake. She just married the wonderful young man that has stayed by her side through all this. She's beautiful, strong, full of life, and surrounded by people that love her, and prayed for by people like me that she's never even spoken to.

She's ONLY 23. It's not fair. It's NOT.

As I was crying with my Facebook group, I said those words, "It's not fair". On one of the worst nights of her life, Susan replied:

"We aren't promised anything fair, Becca. It's just the world we live in. I hate it for Jillian, for me, for my family and all of you who are currently battling this dreadful disease. I am choosing to love Jillian through this, to have no regrets, and to move through this somehow. We all die someday. All of us. And some sooner than others. What we do with our lives today matters. I will make sure that Jillian's Journey will be shared, that your journey will be shared, and that the time spent here on earth matters and we make a difference. I promise you this."

She was comforting ME. I was humbled, and honored.

Susan lost her father a few months ago. Now she is watching her daughter fight for her life. Even surrounded by death, Susan is teaching us how to live. 

I hope I can be a good student today, and when it comes time for my own battle, I hope I can be like Jillian and Susan, and battle this hated black beast with grace... and strength.




...but it's still not fair.



http://jilliansjourneywithmelanoma.blogspot.com/

 

More procedures.....

Well it's been a while since I've written here. I guess there's no reason, just trying to do what everyone says and "get on with my life". I don't mean that to sound bitter, but sometimes you want to tell people your life will NEVER be the same, so stop trying to push it. 

I just finished another round of PET scan and brain MRI and thankfully they were both clear. Met with my oncologist, checked my lymph nodes, general exam, gave me more pain pills for my arm, the usual. That's officially almost a year and a half NED. I was feeling very fortunate until...

I had a normal appt with my primary doctor and he found I had blood in my stool (yeah, giving a stool sample? One of THE most unpleasant things I've ever had to do). Because of the fact that I have Melanoma, he is referring me to a gastroenterologist and suggesting I have a colonoscopy and a sygmoidoscopy. I know they will give me something to partially knock me out, but I'm still very nervous about it. First, I have a very strong gag reflex and the thought of them putting a camera down my throat really freaks me out. Secondly, my primary said it was important to have these tests done to rule out "possible melanoma metastasis". Yeah... the M word. No, not Melanoma, although I hate that one too. I mean Metastasis. The word that means the real battle for my life will begin. I don't ever want to hear that word regarding me, even though I know the odds are against me. I still want more time. 

Doesn't everyone always say that? Any cancer patient will say "I'm not done, I want more time". I envy my grandmother. She was an angel of a woman, everyone loved her. One day, in her early 60's, she went to have lunch with friends at a local diner. In the middle of lunch, as she was laughing at something one of her friends said, she keeled over dead of a heart attack. I couldn't imagine a better way to go....laughing with friends. Except going while asleep could be good too. 

I won't have the two procedures done until December because my parents are going on a month long trip in November, and my mom wants to be with me. I have to say, as much as I wish my mom would stop living in denial regarding my cancer, she's still there with me every single step of the way, every time I have anything done. She's still Mama Bear that doesn't want anyone hurting her little cub. And I am grateful for it. I am also grateful for the Bad Ass Melanoma Warriors on Facebook. They all have it, so they all get it. Got it? 

As a favor to me, if you don't have Melanoma, go get your skin checked for the holidays. Consider it a Christmas gift to yourself. It just might save your life.

"I've seen her dehydrate... it wasn't pretty"

I had my appointment with my oncologist, and Deni came with me. All in all, it turned out pretty good. Well, very good considering. First the scan results came back clean and I think Deni was more nervous to hear the results than I was. She was almost jumping up and down in her chair. I've been through this twice before, but she had never been there with me, sensing the tension, realizing our lives could change in an instant. The only thing my scan showed was a small hernia in my stomach and some small kidney stones, nothing to worry about. Then I tackled the scan schedule subject with my oncologist, telling him that I thought it was way too risky to have the PET scan only once a year right now. He cleared up my stress by explaining his nurse on the phone had read his notes wrong. He wasn't cutting down on the PET scans, but he was cutting the brain MRIs to once a year. WHEW!! I could see the logic in that, and I was cool with it. For the first time I felt like he was actually on my team, in my corner, and it felt so good. I felt good in his care, and that's an important thing.

I did also talk to him about getting some kind of therapy for the stress of recurrence, and as it happened, they had a therapist/counselor right there in the office, so she came in and talked to me for 30 mins or so. I gave her a history and told her about how upset I get when I see friends die from Melanoma on Facebook, and how my family either tells me to think positive or tells me I'll be fine. She was really cool, and she'd heard it all before from cancer patients. She gave me some hints on how to deal with the stress, from using my Xanax, to being able to email or call her any time I wanted, to pulling back a bit from the whole Melanoma community when it gets to be too much. She said I don't have to just stay away from others with Mel, just find a balance and know when I need to take a break and go to my happy place. I think that going to your happy place is important to all cancer patients when it all gets to be too much. For me it's watching a silly movie or listening to uplifting music, maybe splurging on steaks or chinese for dinner if I have the money. I've been trying it more since my talk with her and it has been working.

So all in all it was a good appointment. My next scans will be in October, including the brain MRI. I was supposed to have had my 3 mos skin check with my dermatologist by now, but I got sick and ended up staying overnight in the hospital so I had to reschedule it for next week. The whole surprise overnight hospital visit? According to my primary, he suspects food poisoning, and I tell you, it was not fun. I was at my primary for a normal check up and while there, I suddenly got violently ill. I guess it was a good thing I was already there because it's right across the street from a hospital and my doctor had me admitted on an emergency basis. I can't remember the last time I was so sick, and I spent the night alone there, sleeping, with an IV pushing fluids because they said I was critically dehydrated. I didn't even care to have family there, I just wanted to sleep. The next day I went home and the next day I got a bad cold that I'm still fighting off the remains of. I would rather have my cancer surgeries than have food poisoning again, honestly. God help me if I ever have to have chemo. I'm not fond of explosively evacuating all my bodily fluids from any and all orifices in front of total strangers.

I'm sensing a trend here in the health department and I'm not liking it. Deni says my immune system must be really down at the moment which is why I keep getting one thing after another. I don't know. I'm also plagued with migraines, and now I have a cough. 

Logic tells me I just had my PET scan a few weeks ago, but my "melanoma mind" whispers "Headache? Brain mets!! Cough? Lung mets!!". I just keep having to beat back that little whispering melanoma mind until it shuts the hell up. 

I'd like to be healthy now, at least for a few months. Please?

This is what Melanoma does.

 Since my last post, I must admit my sister has been coming around to see my point of view more. I even called her a Melanoma Nazi yesterday and she laughed. My mom, who just had knee replacement surgery and is recovering, is usually stuck by my side like mama bear whenever I have scans or doctor appointments, but right now she can't. Three days ago I had to have my PET scan and I didn't want to go alone, so my sister came with me. I think it was good for her to see me as "the patient" for once, since I spend all my time taking care of her. The scan itself was uneventful except for the first time the two bottles of scan juice that I had to drink made me sick to my stomach, and I felt awful all during the scan but I forced myself to power through because I didn't want to have to repeat it. 

While I was drinking the scan juice, and sitting quietly in the recliner with warm blankets on me before the scan, I could hear my sister in the waiting room telling another person about how bad Melanoma is. I was so proud I almost cried.

I won't know the results of the scan until next Monday, and Deni will be with me for that, too. I did get a call on Wednesday afternoon from my oncologist's office and it scared the hell out of me. I thought for sure they were calling to tell me there was something on the scan, but no, they were just returning my call from two weeks ago. Sigh.

Yesterday I was so pissed off and angry, but today I am just...resigned. I had called two weeks ago because I wanted to know why they didn't schedule the brain MRI with the PET scan like they usually do. The nurse that called said my oncologist has decided to put me on one PET scan and one brain MRI a year now. I have stage 3 melanoma and it WAS in my lymph node. Also the depth of my melanoma wasn't good, either. That mean I'm at high risk of recurrence. The only way to stop Melanoma is to catch it early, especially in the first two years after diagnosis. It's only been one year for me. National follow up guidelines for Melanoma say the scan schedule should be 3-6 mos for the first two years, then decrease afterwards. I compromised enough as it was by not going for the clinical trial and doing the scans every 6 mos. Granted, most of that had to do with my mom saying she wouldn't take me to Moffit in Tampa for the trial, and her and my oncologist basically ganged up on me and said no Interferon and scans only every 6 mos.

I feel like I've compromised enough. After all, this is my LIFE we're talking about. So when the oncologist's office called, I spent the rest of the day in tears. Even Deni told me I was being a bit of an alarmist, but then later she apologized. 

When you have cancer, it's important to have a good support system that is knowledgeable and supports whatever you decide to do. It's also important to have a medical team around you as well. I hear so many other melanoma patients talk about how their oncologist's are so amazing, are aggressive and understand all about Melanoma, but I really feel like mine doesn't. I don't feel like he's on my side, I never did. I wish when this whole thing began that I had put my foot down and found a way to go to Moffit for everything including my follow up. If I could get there now, I don't know that they'd accept me seeing as how I'm NED right now. I did try to inquire about the trial a few months ago and I was told it was too late.

I spent yesterday crying, and wondering if my family wasn't right and I should just shut up and do what my oncologist wants. Then I get told by a fellow Melanoma warrior that I'm "making excuses" and if I was serious I'd find a way, even if I had to fly. I don't have money to fly, I barely have money to eat. I am an American that has no insurance and no money, and seemingly, no support. Now I feel like the only people I get support from, the fellow warriors on Facebook, are thinking I'm wishy-washy and a complainer. So I feel again like I'm in the middle and everyone is unhappy with me. 

I did talk things over later with my sister and she saw how upset I was, and I think she finally understands. Now she is being my mama bear, saying if my oncologist doesn't listen to me and agree, then we'll go somewhere else. She knows I tried finding another oncologist locally but to no avail but she told me to relax and that she would take care of it. 

Thank god, someone is on my side... finally.

Melanoma is FAST and as we all know, deadly. To have only one scan a year right now is just irresponsible and very risky. Let's give Melanoma a YEAR to spread to my organs before we catch it... uh, NO. This is my life. 

This is what having Melanoma does to you. Not only does it ravage you physically, it ravages you mentally. It changes your relationships with everyone around you. It make you BEG people to understand. It makes you wonder every single day if and when it will come back and if you'll be able to fight it off. It makes you question those around you, it makes you question your own sanity.

It makes you want to go back to before everything started when everything was NORMAL.

But there is no normal anymore. Just Melanoma. And it hurts.

Confused and Hurt

In exactly 4 weeks I will once again be a cancer patient having a brain MRI and my PET scans to make sure Melanoma hasn't popped up as tumors in my organs. Scanxiety is a real condition that grows as you get closer to scan time. Different people react different ways for different reasons. This scan time it will be one year since being diagnosed, and I know the odds of recurrence are high during the first two years, so my anxiety is a little higher this time. I'll still have to wait a week to get the results of my scans, and I'm sure it will be hard to keep it out of my mind during that time. I don't feel like I have tumors anywhere, my glands don't feel swollen, but when you have Melanoma you always have to be prepared for anything.

There's been a lot of talk on the news lately regarding the growing numbers of people with Melanoma, and in the Melanoma community there has been talk of how we can bring even more awareness to the dangers of skin cancer. Now, I'm not a saint or anything, I just want to help prevent others from going through what I've gone through and what I'm still going through. I also see friends and acquaintances online fighting for their lives every single day. I see the pain, the heartache, the people left grieving after a loved one dies from Melanoma. I want to tell others how to avoid this pain. But, and I guess I have to learn to accept this, there are people that want me to shut up, regardless of my good intentions.

I was in a fed-up mood last night and posted something on my Facebook page about deleting anyone that boasts or brags about their sunburns, or about using a tanning salon. I think I have the right to not want to hear about it, just like they have the right to ignore me and my story. But I don't have to listen to it. It hurts me when someone I care about says they're going to go lay out or go tanning. Why should I have to shut my mouth?

I asked my sister today if she thought I was being too heavy-handed by saying I would delete people. She said yes. She said I was turning into a "Melanoma Nazi".

I love my sister more than anyone in the world, and she's my best friend, but right now I'm hurting, and I feel like I've been slapped. Why is it when other people get Melanoma, and they start being an advocate for it, their families are PROUD of them, and many even JOIN them in trying to bring awareness about Melanoma, but some families or family members just want you to drop it?

My sister said she even mentioned how bad tanning is to two different people online today, so she supports me, but she thinks I had no right to say I was going to delete people off my Facebook, that I was trying to force my views on others. She said people don't like being told what to do, and if someone tried to tell me how to eat so I could lose weight that it would piss me off.

I admit, yes, I'm sick of the "campaign against obesity" that's been going on because I am overweight and it's genetic. I could eat better, I could exercise, but I don't. I truly see a time in the future when being overweight will be illegal. But as far as I know, no one has determined a chicken sandwich to be a class 1 carcinogen. I know there are people that can eat themselves to death, but come on.... we're talking about stepping into a machine that gives you cancer. We're talking about radiation from the sun that gives you cancer. You wouldn't go sunbathe next to Chernobyl, would you?

Is my sister right? Should I shut up and let people live their lives without me threatening to delete them from my Facebook? I'm really confused and hurt. I could use some feedback.

What do you think?

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.