Eyes wide open

On December 29th of 2012, Susan's daughter Jillian passed away. It has affected me and sent me into a deep depression, although I've never met Jilly or even spoke to her. But I know Susan, the kind of mother she is, and I feared what would happen to her when Jilly was eventually gone. It seems, even though it's only been a few days, that Susan is still teaching the rest of us how to live, and how to mourn. 

I know Susan has a strong bedrock of faith, and maybe that's the key, I don't know. I do know that my own beliefs are all over the map. Sometimes I tend to look down on people that appear to me to blindly accept religious dogma, other times I envy them their panacea for the fear of death. Who's right or who's wrong doesn't really matter. We are all humans, and we're all here to learn and love.

What matters to me is that Susan is the epitome of grace, and her daughter must have been amazing person. I wish I could have met her. 

And, yes, it scares me. Terrifies me. The same cancer that took Jilly's young life is the same cancer I have, maybe hiding somewhere in my body for the perfect time to pop up and start the war. My mother is finally starting to accept the reality of Melanoma. She told the rest of my family in an email that I will never be cured of Melanoma, and she now refers to me as having cancer, not having had cancer.

Don't get me wrong, I don't want to worry my mom, god knows she has enough to worry about with the rest of my messed up family, but it seems with me she is pulling her head out of the sand little by little.

The other day, one of my sisters started a fight with me on Facebook, saying that I cared more about the color of my new iPod than I care about people, and that she's so broke she can barely afford a winter coat. I was shocked and dismayed at her words. 

How can you tell someone with Melanoma that they value things over people? I think anyone with Melanoma has pretty much faced their own mortality on a daily basis, especially me because I stress about it so much. But I asked myself if I have been acting the way she accused me of. My mother and sister Deni just said she was angry because her husband isn't working much, and she picked up and moved halfway across country and now she's realizing she made a bad decision and she's broke. There have been many a time in the past when Deni and I were struggling financially and the sister in question was doing well, going on cruises, taking trips, and we never begrudged her. 

She later emailed Deni and said she was sorry for attacking us both, that's she's just stressed. It was a good lesson for me, though. I don't ever want to get to acting like things are more important than people. I'm thrilled to have a new iPod 5, and I'm so SO happy I got Deni her iPad Mini for Christmas, but there is never a moment when I don't realize these are just objects, just things, and PEOPLE are what matter.

I'm not actively fighting Melanoma like some of my friends are, but I am still undergoing procedures that I wouldn't have to have if I didn't have a history of Melanoma. I know my pathology report wasn't good, and I know melanoma had travelled to my lymph nodes. I'm still having my dermatologist appointments every 3 months. I'm still having my scans and oncologist appointment every 6 months, and every time I get a headache, which I get ALOT, it scares the hell out of me thinking the Melanoma has gone active and has started attacking my body. Next week I'm having a camera stuck down my throat to look into my stomach for Melanoma, and the following week I'm having a colonoscopy to look for Melanoma. These are small procedures, but still scary to me, especially the results. 
 
Trust me, I'm aware that my life is balanced on a tightrope, and however long I have to live, it will be this way to the end. I'm aware that there's every reason to believe Melanoma will be the cause of my eventual demise. We don't call it the Beast for nothing, but the time I do have, I will make sure to value people over things. 

When I see someone like Jillian fight for every second of her life, when I see my other friend Jennifer constantly in the hospital fighting this damn cancer so she can go home to her little boy, when I saw Steve Hock undergo brain surgery after surgery and still have the sense of humor to make the rest of us smile or laugh.... how can I not value people more than anything in the world?

Today, the day Jillian's family have a celebration of her life, I value her, and I value her mother, for showing the rest of us what life is all about, what is truly of value.

  Jilly

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.

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.

Back to Normal

I would have posted earlier regarding my scans and results, but I have had a separate health problem that has me extremely anemic and tired all the time. If it's not the fatigue, then it's headaches from hell. Basically it's all hormone related and my doc is trying to sort it all out but until then I'm up and down. 

My scans were uneventful, although they didn't give me any nice warm blankets so I was bummed. It took a week for my Oncologist to get back with me about the results and that was with me calling the office several times a day. I met with him two days ago and we went over the scan results, which were normal. He looked at my swollen right side near my arm but didn't seem concerned with the swelling. He scheduled me for another PET scan in April - 6 months from now.

Yesterday I went to the dermatologist, and as usual, they took me straight back to the procedure room. It wasn't needed though, because my skin exam was clear, nothing to cut off! She scheduled me for a 3 month appt in February. 

So basically I'm in the clear until next February and I can sit back and enjoy the holidays as a normal person, and not a cancer patient.

Everyone loves to be tucked in!

My 6 mos PET scan and brain MRI are coming up next Friday the 28th. I'm dreading them because of not being able to eat or drink beforehand. I am diabetic too, so I need a drink with me all the time and without food I can get a wicked headache. Well, we all know how much noise those machines make, especially the MRI machine, banging away like a few jackhammers trying to get inside your skull. I have my PET scan at 9:30am and my MRI 3 hours later. I know by the time I'm done, I'll be starving, thirsty as hell, and I'll probably have a headache to rival all headaches. That's why I'm having the parentals take me. As soon as I get out of the MRI, I'll be grabbing a drink and some pain pills ASAP and there's no way I could drive home.

The thing I'm looking forward to probably sounds silly to others. Once I get to the PET scan, they inject me with some highly radioactive material, then place me in a dark room to rest for an hour. This is so the material can travel throughout my body, but I have to remain very relaxed. They let you lay back in these huge recliners that they use for the chemo infusion people, and they have these blankets that they keep in blanket warmers, so they lay you back, place these warm snuggy blankets over you, and tuck you in. Granted, they also hand you some nasty stuff you have to drink during your time there, too, but getting to relax and being tucked in is just so nice. Yeah, I know... I would actually look forward to chemo if I ever had it, right? Not the after effects, no. In a way it's almost like I get to just relax and concentrate on myself for a whole day. Since I'm a full time caregiver for my sister, it's the little things that I have to take pleasure in when I find them.

I usually load up some special movie or shows on my iPod and sit there and just relax for the hour until they come to get me. Once they get me and bring me back and tuck me into the scan table (again, nice blankets and foam thingies to prop your legs on), that's when it starts to get noisy, and I start to actively participate. I'm not a person to meditate because I'll just fall asleep, and falling asleep in these machines is impossible. Instead, I try to concentrate on getting great scan results. I imagine all the different parts of my body under the scanner responding perfectly to the injection, and if there is anything unusual at all, I imagine it lighting up like a christmas tree. If there's something bad there, I WANT to know. But of course I pray the whole time for clean results. Clean, clean, clean. It takes about 45 mins to an hour. After that I will have an hour or more before my MRI and that part WILL suck. Still no water - no food.

Once I get in the MRI, the real suckage starts with all the banging. But at least I'll know I'm almost over the worst.

Or course after that it's all waiting until I meet with my oncologist a few days later to find out the results. I really do feel like I'll be clear, but I know having anxiety over it is normal. The week after I meet with my oncologist, I'll have another appt with my dermatologist. I guess what they say is right... Once a melanoma patient, always a melanoma patient.

I have a black melanoma awareness bracelet that a wonderful melanoma warrior's mom sent me. I will never take it off. I will always wear it proudly.

RIP Lisa :(

Another warrior against this horrible black beast has completed her journey. Rest in Peace, Lisa of "Melanoma Lisa". You fought your battle with tons of laughter and a hell of a tough spirit. I hope you're in a better place, completely healthy and endlessly happy. 

Melanoma just broke the heart of another family, and left another person without his mother. This happens every hour. Please learn from our example and protect your skin. 

It's very simple... Melanoma Kills. Don't be a victim.

Please say a prayer for Lisa's family.

Still hanging in there

I took Deni to my dermatologist last week, and she had a full body check. Unfortunately, my doctor was busy with another patient, but two other doctors gave Deni the twice-over, and she got a clean skin scan. Of course, once they found out I had Melanoma they wanted to see my scars and asked me all about what stage I was at and what treatments I had done. I felt a little weird because when they were done, and they walked out of the room they said to Deni "Nice to meet you", then turned to me and said "Good luck". I just kinda felt like... "Geee, thanks. You mean I hope you don't DIE!" LOL. I know, I was just being way too sensitive. While Deni was putting her clothes back on, I threw her shirt at her and said "Showoff" because her skin is good. I was really relieved, though. There was a spot on her foot that was concerning but they said it was probably just a wart. Deni has had at least 7 or 8 cancerous basal cell growths cut off body before, so it was great to hear she was clear for now.

I have my six month scans coming up later this month and I'm already getting a little scanxiety. I'll have a full body PET scan, then a few hours later an MRI of my brain. Then I can prove to my family once and for all that I actually DO have a brain!

Until then, trying to stay positive and live my life....

Right now I just want to cry

I'm so upset. I went with mom today to take her kitty to a place in Lake City that has a visiting vet. They have a van and set up a mobile vet's office in a parking lot and you can get your pets' shots and vaccinations at a lower cost. So we were there waiting and one of the vet techs had her hair back in a pony tail. She had blonde hair and fair skin. I saw that the back of her neck and her shoulders were BRIGHT red. There was no denying she had a sunburn. So I said to her "Wow, you really got burned, huh?" and she smiled and said "Yeah... so?", then just seemed to drop it. I heard mom behind me mutter "Uh oh, here she goes...". The girl kept looking at me out of the side of her eyes like she expected me to jump her or something, and I just stood there uncomfortably. I wanted to ask her if she had sunscreen. I wanted to pull down the collar of my shirt and show her my huge scars. I wanted to tell her "Please, don't get sunburned like that again. You don't understand what it might cost you in the long run". Instead, I kept my mouth shut until they were done with the kitty, turned around, and walked back to the car.

I felt embarassed for having melanoma. I felt embarassed for wanting to save someone else some pain. I'm sitting here and I still feel awful. I'm angry and I want to cry at the same time. I want to make my own t-shirt, purple, (size XXXL because I'm a large girl), I want it to have a black ribbon on it, and I want it to say "If you could see my scars, you'd never tan, you'd never sunburn, and you'd get your skin checked". And on the back it would say "I have Melanoma, I have CANCER. It almost killed me. It still might".

Then I wouldn't have to say a word.

I'm not a Melanoma nazi. I'm not a know-it-all. My body has scars. My family CRIED over me. I CRIED myself. I was terrified. You see that great big orange ball in the sky? You get close enough to it, it Will KILL YOU. You get enough of it, IT WILL KILL YOU. You wouldn't walk around in Chernobyl and dig in the dirt day after day would you? Laying out in the sun does THE SAME DAMN THING. It's called CANCER. I've never used a tanning bed, but I know many have. Again, the same damn thing. If you are fair skinned and have a history of skin cancer, same damn thing. Go play in Chernobyl. Then come cry to me when you're in the infusion ward of a hospital getting chemo.

I know this vet tech is thinking "Today some weird girl commented on my sunburn, like, what's it to her?" and this is what I should have said...

Today some stranger with cancer, who has been through hell the past 6 months, loved you enough to want to help you from ending up like her.

I heard back from my derm and my biopsies were both clear. She also said she checked around and the only option available to me is Interferon. Surprise. Which is exactly what I had thought would happen. With Interferon I have no problem saying "no thanks". Extreme side effects, giving yourself injections, and feeling like you have the flu for almost a year? No thanks. I'm gonna feel good for a year, hope I stay clear, and live my life. Now... if the cancer comes back and I progress to stage 4, it's on, bitches. I will do ANYTHING and everything in my power no matter how sick it might make me because by then all bets will be off and I WILL be fighting for my life. But for now... I am clear and happy for it. It's been a tough year, a really hard year for me, but now it's time to relax and enjoy life and support others in their journeys.

When I hear of someone who is newly diagnosed and terrified, it makes me feel so GOOD to be able to tell them my story, educate them as to what they might go through, and let them know that if *I* did it, they can too. That's what I will concentrate on in addition to living my life. And, of course, I still have my scans to do every few months, and more biopsies at the derm. But I can handle that. I can kick ass at that.

I didn't write an entry as soon as I got home from the dermatologist because my mind was spinning and I had a lot to think about. Things still haven't resolved themselves but I feel they are leaning in a certain direction.

My sister Deni was supposed to go with me to the appointment but she didn't feel well enough, so I went with mom. It was strange walking back into the place where everything began back in March. They took me straight back to a procedure room instead of a regular examining room, and I should have known then and there that something was up. Mom said it was because I'm a Melanoma patient now, so I get the "gold service". Yeah, right. It was nice to see my derm doc again, she was happy to see me and did a regular body to toe exam with her assistant. They let me keep my bra and panties on, which I was happy about. There was a mole on my back that she wanted to biopsy, and one on my face near my mouth that I've had for ages and ages. I had that one burned off once about 15 years ago but it grew back. Now I knew why they put me straight into a procedure room!

The shots in my back stung a bit, but like little tiny pinpricks, It was the big shot they gave me near the corner of my mouth that felt like a staple gun. I definately yelled out a choice word or two, then started laughing because they were laughing. Once I was all numbed up, the assistants started doing the biopsies, which I couldn't feel at all, and I tried to continue to talk to my derm while she was writing her notes. Somewhere she must have read that I'd decided not to do the Yervoy trial and she seemed surprised and concerned and asked me why. I explained everything, the family troubles, no car, no money, etc. Then I said "Well even if I changed my mind now, it would be too late. They only took people within a certain time after surgery and I think it's been too long now". It was the fact that she looked concerned on my behalf that worried me I'd suddenly felt as if I've made a massive mistake in letting my family convince me to do observation.

My derm and mom talked back and forth, discussing the benefits of observation vs clinical trials, and how many scans a year were too many vs too little for a stage 3b melanoma patient. My derm told me about how many patients she's seen with melanoma, and she's clearly had more experience with it than my oncologist, who is not a mel specialist, just a regular onc. She told me if it were her, she'd continue looking for a trial somewhere that would take me. She gave me the name of a Dr. Weber at the Moffitt Cancer Center in Tampa to email and see if I could still get in.

All the way home mom and I discussed my appointment, with my mom still stubbornly taking my onc's side, and me taking my derm's side. In the end mom said I could do what I wanted, it was my life, but I'd have to come up with money for gas, somewhere to stay, and money for food. Right now my bank balance is almost $-400.00 so unless I go begging, that's not gonna happen. Of course I came straight home and emailed Dr. Weber, then started looking up any kind of support I could get from the American Cancer Society. Mom says she would support me in whatever I decide to do, but I don't "feel" supported by her, whereas Deni gets on the internet and on the phone and starts gathering information for me. Also the other day I told mom I had pain in my right hand near my wrist and it's on my bad arm where I had the lymph nodes out. Mom sort of gave me this look at first like she was alarmed, then like she thought I was being a hypochondriac. Finally I just dropped the subject. Yesterday out of the blue she asked if my wrist still hurt and I said yes, then changed the subject. Honestly, at this point if there was a cyst or tumor there, I would bite off my tongue before I'd complain to her about it. Either she gets the message about Melanoma, or she doesn't. It isn't like other cancer. Period.

So anyways, I got an answer from Dr. Weber within 12 hours of emailing him and he said I had waited too long after surgery and no clinical trial in the U.S. would take me now, and observation would be the best and only option available to me now. I was crushed, and maybe just a tad relieved. I had no idea how I was going to come up with the money to travel and get the treatment. But moreso I felt like I had let myself down by listening to everyone else instead listening to the little voice in my gut saying "do the trial".

Here's another thing that really bothers me. My derm told me the Yervoy trial at Moffitt was a crossover trial, meaning that if they proved the drug effective, and they have, then all the people in the placebo group would be given the real drug at the end of the trial. My Onc NEVER told me that, and if I had known that, it would have made a difference. I might have fought to do the trial harder, mom might even have decided it was worth it because I would eventually get the drug either way. Now you see why I trust my derm more than my onc.

I emailed my derm back and told her what Dr. Weber had said, and I got a reply within a few days. She said she was going to check around UF and see what she could find that might be available to me. If Yervoy has been approved, I asked her, then I should be able to get it somewhere, maybe even in Gainesville. Also there's been a new drug approved this past week, and she mentioned checking on that as well. That was last Thursday and I haven't heard back from her since, plus I haven't heard any pathology on the two biospsies she did, so I'm going to email her today and see what's going on. If she tells me there's nothing else out there for me, I will trust her and be satisfied. I wish she were an oncologist. The one I have now is a nice man, but I think he's a bit dated in his Melanoma approach.

At some point I'll need to have my wrist looked at, just to make sure it's nothing to be worried about, but it hurts me every day and it's not going away. If it's just nerve damage from my arm, fine. I just want to know. Anyone that's had cancer understands the panic the first year everytime something doesn't feel right. Keep your fingers crossed for me.