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.

You better check yourself..... :)

So I guess I've decided to tell people outside of the Melanoma family that I'm in remission. That way they understand that I'm in a "wait and see" mode, that I live with the uncertainty of cancer coming back every day. I've joined a Melanoma group on Facebook called Bad Ass Melanoma Warriors and the people there are so positive, supportive, and FUNNY. I tell you, humor goes a long way when you have Melanoma, or any cancer. If you're reading this and you have Melanoma, join that group. You won't regret it.

I have my first follow up at the dermatologist the day after tomorrow. The good news is Deni has a few suspicious spots and she has an appt with the same doctor at the same time. I'm so glad. I don't think hers are Melanoma, but she's had several basal cell skin cancers removed, so I'm just really happy she's getting checked out. My dermatologist gave me my very first Melanoma scar, and it was small compared to what I have now. I'm sure she'll want to see them all. I have a special purple shirt that I wear to the doctor because it shows off my chest scar and it's easy to lift and show my under arm scar. It sounds funny to say "show off" my scars, but that's how I feel. If my scars can prompt a total stranger to ask me what happened, I will DELIGHT in telling them how awful Melanoma is. I will be THRILLED to bring more awareness to this black beast that no one ever talks about. You hear about breast cancer everywhere, but not Melanoma, which is the FASTEST growing cancer in young people today.

I've heard because I am a stage 3 now, my dermatologist will want to check me just about EVERYWHERE. I guess I'm glad she's a woman, but at the same time, I feel sorry for her...LOL. I will let you all know how it goes!

Seriously?

I went to the dr with mom today, it was her orthopedist to get her knee injection. She told him I had cancer, which started a conversation about melanoma. He asked me what kind of therapy I was doing, chemo, radiation, etc? I said no, I was just doing observation. I told mom later I felt guilty saying that, like I was just sitting back and waiting to see what would happen.

An hour later we had an appt with my regular doctor. He asked how my melanoma started and I was showing him the scar on my chest where the initial mole was. He said "Well you have a pretty good chance of melanoma reoccurring at the initial site but if you go two years with no return, it probably won't ever come back".

I was only diagnosed with melanoma in March of this year, and already I know more about it than most doctors out there.

A Warrior becomes an Angel

One of the blog writers I used to read passed away the other day. Eric of "Tan Today, Tumors Tomorrow aka Melanoma Sucks" ended his years long battle against Melanoma, leaving his grieving wife Jill and their family and friends. I didn't know them, but like I said before, anytime this black beast takes a life, my heart breaks, but I also get inspired by how strong and courageous he was right up to the end. If you'd like to read more about his journey you can find his story here: http://melanomasucks.blogspot.com/

And if you can spare a prayer for his family at this horribly difficult time, I'm sure they would appreciate it.

RIP Eric. Melanoma DOES suck.

All is well

My Appointment with Doc Onc was two days ago. I guess there wasn't really much to report, which is why I didn't run right home and write about it. He did the usual exam... felt my lymph nodes under my arms, throat, sides of my upper thighs, looked at my lymphadema on my arm, looked at my scars, checked my vitals, made me say "Ahhhh", the usual. I showed him the papers I printed out and he said the 3 month scan schedule was out of date, it's more like a 6-12 month scan schedule now (I still disagreed). Mom told him her fears of me having too many scans and he agreed with her, but also agreed with me for my peace of mind. Basically, we compromised. In October I will be having a full body PET scan and a brain MRI. I can call the next day for the results, and I'll see him in November. All is well so far.

Later this month I'll be seeing my dermatologist for my follow up and to see if she wants to remove any other spots on my body.

I've had a few people ask me how I got melanoma... did I use tanning beds? Did I lay out in the sun? Does my family have a history of skin cancer?

I can say that unlike alot of other melanoma victims, I never used a tanning bed. Not once. But I did lay out in the sun when I was in my teens and I can't remember how many bad sunburns I've had. LOTS. I also have a history of skin cancer with several members of my family; never melanoma, but basal cell. So it was probably a forgone conclusion that I would get skin cancer of some form at some time in my life. Mine was probably a combination of genetics and too many sunburns before the age of 18. At the time I was getting those burns, back in the late 70's - early 80's, EVERYONE thought sunburns were at least better looking than white skin. I desperately tried my best to get some color, but I'm Irish. It just wasn't going to work. I should have known better. We all should have.

My biggest mistake in all this was not getting my mole checked out earlier. I did put it off somewhat. I was busy taking care of everyone else and sick and tired of hassling with the doctors to approve me to go.

Yes, huge mistake. It could have cost me my life. It still could.

So if you learn anything from readying my blog and reading about melanoma from me, at least, if you're pale skinned...learn to love it. If you MUST have color, use a spray tan or a lotion. I wish I had those options when I was a teenager.

And most importantly, if you see something odd or a change on your skin, have it checked out ASAP. It's so easy to have something removed early on so you can go on with your life. If you wait, it may take your life.

Love yourself and your skin. Pale skin is beautiful!

Frustrating

 I was sitting at mom's the other day and I asked her if she could print some paperwork out for me on her printer. I explained that I wanted to take it with me on Wednesday to my oncologist's appointment. They are the guidelines to a 3 month follow up of a Melanoma patient - what scans should be done, etc. Mom was a little hesitant and asked why and I explained that if Doc Onc doesn't schedule me for any scans, I'm going to pull out the paperwork and ask him why. She said "Don't you think it might piss him off? Like he might think you're trying to tell him his job".

I mentioned in my previous entry that my sister Deni wasn't really understanding of how I've been feeling lately, and how mom is more able to relate. Well it seems they've decided to switch roles this week. Deni is definitely supportive of me questioning my oncologist because she's had her share of trouble with doctors. Now suddenly mom doesn't want me to questions what the onc does. It's like she wants to stick her fingers in her ears and go "la la la la" and say "think positive, it will all be fine, just think positive". I agree thinking positive can help, but so does having scans.

She's worried about the effect of the scans on my health. She's worried having too many scans will give me cancer.

How ironic is that??? I just got OVER having cancer. For all I know, it may still be in my body. If you're reading this, you probably understand how sneaky Melanoma is, how it is more likely to come back than alot of other cancers. This is another thing about Melanoma that most people just don't get. Not only can it kill you easily, once you have it in your body you're pretty much never going to be in a full stand down mode ever again. You'll always have to be on the alert for it... and that's if you're one of the lucky ones.

Want to know how my future looks right now? If I go 2 years from now with no Melanoma, I'll be happy. If I go 5 years I will be really really happy. If I manage to survive 10 years from now, I will be one of the lucky ones. That's just how it is. This is not me being negative, this is Melanoma.

So mom worries that the scans will give me cancer in maybe 20 years. I would rather have the scans to make sure the melanoma doesn't come back and kill me in 2 years, or 5, or 10. I can't even imagine I'll still be around in 20 years. If I am, I will worry about it then. But by then I'll be 66 so I will consider my life pretty much a good span by then.

Mom is insisting on being with me at the appointment Wednesday. This is nothing new, she's been with me through this whole journey, but I have a feeling she plans on ganging up on me with the doctor, saying "I TOLD her she doesn't need all these scans!". Deni says mom is just scared and doesn't want to go back to where we were a few months ago, amidst all the surgeries and uncertainty. I can understand that, I really can, but I'm not willing to stick my fingers in my ears. Not about this.

I feel so frustrated. Has anyone else ever had this problem?

You just don't get it and don't tell me to relax

I'm currently stage IIIb or c, depending on which doctor you ask. I can't seem to get a straight answer from any of them. When I was first diagnosed and discussed my options, my oncologist said he was against Interferon therapy because it makes you feel like you have the flu for a long time, like almost a year, and because the statistics show it doesn't really add any time to a patient's survival. Being the person that I am, I didn't really like the sound of being sick with the flu for a year and having to give myself shots. I figured there were other options out there instead, and there were; clinical trials or observation. I wasn't considered "sick enough" for chemo or radiation therapy, I was in that gray area.

Long story short, if you've read back through my entries you know I wanted to do the clinical trial of Yervoy but due to family troubles I decided not to. My mom wanted me to do "observation", so that's what I'd do. But I have to admit I'm scared. Every time I hear of someone else that is the same stage as me, with melanoma in the same area thereabouts, and they are following up their surgeries with Yervoy or Interferon, I get scared, and a little jealous. I know, that sounds messed up, at least the jealous part does.

I'm not jealous of the pain and suffering, side effects, etc. I'm jealous that those people will KNOW for SURE that they've done everything they possibly could to keep Melanoma from coming back. I'm scared my Melanoma will come back every single day. If it does come back, I will always wonder if I played Russian Roulette with my life and lost. And part of me wonders if my oncologist is the right one for me. Maybe I need one more aggressive?

Unfortunately because of my lack of insurance, I have to accept who I'm given. Now don't get me wrong, this guy is from Shands in Gainesville, very respected, and everyone I've mentioned him to has only good things to say about him. But I don't know if he's a specialist with Melanoma, and if he's not, I don't know how to find one that would see me with me not having any insurance or money.

It's been almost 4 months now since my initial diagnostic scans pre-surgeries. From what I've read online and heard from other melanoma warriors, the first year we are supposed to have scans every 3 months.

My first follow up appointment with my oncologist is next Wednesday and if he doesn't schedule me for a PET scan, and some other scans, I think I might start asking some hard questions. After all, that's what observation is, right? It's MAKING SURE the melanoma doesn't come back, doing blood work, checking my skin, my remaining lymph nodes, doing xrays, cat scans, MRI's, PET scans. If I get in there and he just does a general exam, take my vitals and listens to my heart and says everything looks good, I think I'm going to get upset.

This is my health. My cancer. My life.

I waited to get my mole looked at and it cost me alot. I'm never going to sit back and be that complacent again. If he doesn't follow me AGGRESSIVELY by doing the proper scans and blood work then I will be forced to find someone else. I already feel like I'm being complacent enough by not doing Interferon or Yervoy. If he tells me to sit back and relax, I may have to scream.

Does this make sense to anyone? Do you have to have cancer to understand what I mean??

The other day my sister said to me "I have a feeling I'm going to know more about Melanoma than I've ever wanted to". I apologized and told her I would try not to talk about it so much to her. But if I can't talk to her, or to mom, the only people I can talk about it to are the people online that have melanoma. I'm only 4 months out of being diagnosed. I'm scared. I need support and I need to talk.

A few days later we were watching a reality competition show on tv and one of the competitors was a cancer survivor. My sister said "Oh, I know which one YOU'RE going to root for". I know she didn't mean anything negative by that, but I felt like she was calling me "cancer girl" or something. Yes, I feel for that person, I understand a little of what they've gone through. People can root for their favorite football teams, why can't I root for a fellow cancer survivor?

I guess it all comes back to unless you've had a doctor look you in the eye and tell you that you have cancer... you just don't get it.

Love, Love, Love

So, you're cleared of cancer (for the moment), you've had all the surgeries, and maybe some kinds of treatments, you're starting to feel normal again, you're technically NED (No Evidence of Disease). How do you start living your life again and leave Melanoma behind?

Easy answer. You don't.

You see, through my journey I've read a group of websites and blogs by people who were going through or have gone through the same thing. Besides my family, these websites and blogs were critical in helping me get through. From reading them and friending some of them on Facebook I've come to care about these people, even if I've never spoken to them. There's something that happens once you get cancer, suddenly everyone that has your type of cancer is family, and you want to support your family through the good times and the bad. Just because I'm NED doesn't mean I plan to ditch the sites I read, stop caring about the people that are fighting every day, being happy for the ones that are NED like me. Of course, that route has it's risks. Sometimes the people you've read about for a while... they get worse. Really worse.

And sometimes they die.

I admit when that happens my heart breaks and I freak out a little. Could that be me someday? Will it? Why that person? Why their poor family? No one deserves this. The last time this happened, I believe it was last week, it sent me into a panic attack that only Xanax could get me out of. Sometimes life isn't fair, and Melanoma sucks every single day that there is no cure for it. It sucks the life out of people and breaks the hearts of everyone that witnesses it. My family says to stop reading the cancer blogs, stop going to the websites. Just STOP and be happy it's not me and get on with my life.

I can't do that. I just can't. Why? Because together we are stronger. When I had my lymphocintigraphy shots done, I kept thinking "I'm gonna kick this in the ass, then go home and tell everyone online about how brave I was!!". And it worked. Those shots hurt like bloody hell, but if I had to paint rainbows on my face and wear a bikini to get through it, I would have. Just the thought of how proud my family and friends would be of me (and that includes online friends) was what helped me walk into Nuclear Medicine and say "Bring it!".

My family loves me. I know that. Especially my sister Deni that lives with me. She's the one who I cry to when the world gets too much. My mom has had ovarian cancer, she knows the constant fear of "will it come back?". These two people are the most affected when I freak out, have a panic attack, or get depressed, so I can understand why they don't want me reading the Melanoma blogs. I'm not wallowing in the negative, living in cancer-land, concentrating on the negative. I'm sharing and supporting in the new family that I've become a member of. I want to help others that have just been diagnosed and are scared out of their wits. I want to tell the ones that have to have surgery that they are stronger than they think they are, and it will be ok. And when someone dies, I want to add my heartbreak to theirs in the hopes that their family will feel the love and support and take comfort in it. But mostly, I want to be an advocate for Melanoma Awareness. I can't do that if I hide my head in the sand.

So what's the answer? Keep reading the cancer blogs or stop?

The answer is balance. Live my life, laugh, love, be happy for the good things I have. Support those that need support, and when times get hard... cry, ask for help, get support from friends and family. Because Melanoma is a part of my life now, and that's never going to end. I know too much about this disease to know that I'll ever be far from it. It can come back any time, in my liver, lungs, brain, anywhere. And if I'm one of the lucky ones that remain NED for a long time, I hope to spend that time supporting others while living my life.

In the immortal words of Eva Markvoort, who has been a huge inspiration for me, "It's all about the love. Love, love, love".

July 5th 2011 - My version of what will hopefully be the last surgery....

I had a feeling this tumor was benign, but I knew it had to come out, otherwise I would always wonder.. and be scared. So on Monday Mom and I headed over to the ortho oncologist for a pre-pre-op checkup. I got to ask questions and get the play-by-play from Doc Onc and his trusty sidekick Mr Fellow (who is actually kinda cute). Once I was done there, Mom and I ran a few errands and made it to Shands hospital Anesthesiology dept in time for my official pre-op. This consists of waiting in a waiting room along with about 30 other people, getting called on, go back and fill out paperwork, go back to waiting room and wait, getting called, go fill out more paperwork with someone else, go back and wait more, getting called, go have tube after tube of blood taken, etc. It takes about 2-3 hours all total, but mine went a bit faster since I already knew the drill. Many of the questions and things they had to tell me I already knew. One of the ladies even asked if I could go out and let everyone else know the drill because she was tired of saying all the usual things...lol. There's something to be said for having as many surgeries in as little time as I have had.

Once that was done, I had myself a latte thanks to mom and went home to rest. I was assured by Doc Onc that he would try and schedule my surgery as early as he could so I wouldn't have to go so long without any water or drink. The last time my surgery didn't happen until early afternoon and I hadn't had anything, not even a sip of water in over 12 hours. Food I can do without, but a drink... I'm diabetic and I get cotton mouth really easy, so I always have a drink next to me. So anyways, Doc Onc promised me an early surgery. Later Monday I called Pre-op to find out my surgery time and they told me to be at the hospital at 10am, which meant no surgery until noon, which also meant another 12 hours with no water. I was so pissed, I ranted and raved and just generally had myself a little meltdown. It's funny the things that will get you down. For me it was the straw that broke the camel's back. I was nervous and stressed and a little scared, and by the time they told me the surgery time I had just had it. Luckily for me I have a great mom and sister that basically told me to "Suck it up, Princess!" and I got over myself. The next morning pre-op called at 7am and asked how soon I could get to the hospital. Seems they had a cancellation or something, so my early surgery was back on... after all that bitching and moaning...LOL. So Mom and I grabbed our stuff and took off.

Once there they took me straight back and I left Mom in the waiting room. I knew once they did a few housekeeping things (took vitals, changed me into the dreaded hospital gown, hooked me up to machines, inserted the IV) that they would let her come back and sit with me, so I was pretty relaxed. I knew the drill. Getting the IV in wasn't easy because I only have one arm they can use (I'm not allowed to use the lymph node dissected arm for shots, vitals, IVs...anything), and the one vein they tried blew as soon as they got it, so they had to stick me twice but they eventually got it inserted. It was uncomfortable and really pinched and I hope later it would settle down and stop hurting. Once I had all the doctors come in and check on me, they said they were going to do the nerve block right there before they took me into the OR. I asked if Mom could come back and be with me and they said no, not until it was over. Now, I know I'm 46 yrs old, supposed to be a grown woman, not afraid of stuff, but I was afraid of this nerve block and damnit, I just wanted my mom with me. I started to get really nervous, but then suddenly I was overcome by a feeling of calm. Something told me that they had taken good care of me before, and they wouldn't do anything that would hurt me. I don't know where this feeling came from, but I went with it.

They injected something calming into my IV (yeah I know, but this was AFTER I felt calm), and then rolled me onto my left side. I felt something cold and wet on the side of my upper thigh (alcohol), and then I felt a poke... and another. I knew they were injecting my nerve twice, and I remember saying "ouch" twice, but it wasn't a big deal and it's all kind of fuzzy now. The next thing I knew I was laying there relaxed and Mom was with me and everything was fine. Weird. Why can't they give me that stuff at the dentist? Laughing gas is great, but not like this stuff.

A few mins later Mom kissed me goodbye and went to get breakfast while they wheeled me into the OR. Doc Onc said a few things to me as I lay there looking at all the lights and instruments, and I think I said my usual to him, "Do a good job!", and I was out.

I woke up in recovery hours later. I thought they said they weren't going to put me to sleep? Well I guess they did. I still don't understand it. Apparently there are different levels of being put to sleep and they used a new one on me... I think. I don't know, all I care is that I don't remember a thing. When I woke up in recovery it was with the usual sore throat and I lay there and sipped ice water for about an hour, drifting in and out. I vaguely remember Doc Onc stopping by my bed to tell me he was pretty sure the tumor was benign, and then Mom was there with me. As I woke more I realized I had a long blue velcro immobilizer on my leg from the upper thigh to my ankle... and I couldn't feel my leg AT ALL. Very weird. Of course there was no pain, just my throat being sore.

A while later they wheeled me upstairs to my room and Mom and I got settled in. One nice thing about staying in the hospital in New Shands in the cancer section, the rooms are all private. I spent the rest of that day just laying there, not being able to feel a thing, watching tv with mom, and drifting in and out of sleep. Mom was so great and got me a little pizza for lunch along with a frozen latte... my favorite, so I was a happy girl. And it was confirmed the tumor was benign.

Later that night Mom was asleep on the pull out couch, and I was getting IV antibiotics all day on and off, when suddenly it started burning like acid in my hand and it was so bad that I told the nurse to take it out completely. Usually they would have argued with me about it, but I told them in no uncertain terms that if they didn't take it out.. I would, so they did. I still don't know what happened, I guess my vein blew or something, but once it was out my hand felt so good. Relief! That was the only thing that happened that night. Oh and every nurse and doctor that came in kept telling me that when the nerve block wore off, it would wear off really fast and the pain would hit me like a truck, so at the first hint of discomfort, I was to tell the nurse and she would start me on my pain meds. Mom and I almost got paranoid about it. Finally about 2am I could wiggle my toes again (you wouldn't think it would be a big deal but I was SO HAPPY to feel my toes!!!) and I started to feel a little pain, maybe a 1.5 on a scale of 10, so I told the nurse and she gave me a pain pill. After all the warnings, my pain never got above a level 3 or so, which surprised the nurses and doctors, but Mom said I have a high pain threshold just like her and Deni, which made me proud. Everyone in my family always thought I was a wimp.... until now.

The next day Doc Onc came by to tell me I could go home, and then Physical Therapy came by to show me how to get around. So far until now I had been using a portable potty chair next to my bed because I couldn't get to the bathroom. They brought in a walker and some crutches for me and showed me how to stand up safely. The crutches, which I thought would be good, were ackward and I hated them. The walker, like Mom predicted, was great and I used that to walk out of the room and down the hall a bit. Then they put me in a wheelchair and took me to the physical therapy room that had different things in it, along with my nemesis, the small mock up of stairs and a landing.

They showed me how to get up the stairs and down first using the crutches, then using the walker. It was a shock to me to discover how weak I was and how totally useless my leg was. I hated the stairs, and both my house and Mom's house have stairs up to the house that I would have to navigate if I were to get inside. I had a little mini-freakout and sat there and cried. I hated that I couldn't walk, couldn't use the bathroom like a normal person, couldn't get up or down stairs, etc. I just hated feeling disabled. It was a good lesson for me. I eventually started getting up and around my hospital room a bit more and started feeling better and they released me.

Once I got back to mom's, which is where I stayed for 2 days, I got up the stairs easier than I had thought I would. It was still really awkward but I did it. The next day it was even easier, and so on. Right now I'm walking without a walker or crutches, or should I say "limping" around. I have a wonderful "L" shaped scar on the back of my leg to add to my collection, and very little pain. Mostly my leg feels really stiff. After two days I took off the big blue monster leg immobilizer and I felt so much better. Now all I have to do is heal. I'm back to making dinner and waiting on Deni, albeit much slower than normal. Today I will go grocery shopping and I will have to use an electric chair for the first time. It will be an odd feeling but if anyone questions me I can point to my incision which is still very visible.

I'm hoping this will be my last surgery for a long, long time. I've gone 46 years with no surgery other than oral, and now within 4 months have had 4 surgeries. I think I've earned a rest now...lol.

June 30th, 2011 - Surgery #4 Complete!

Home from the hospital and doing good. Limping around with a walker and have a big blue velcro leg immobilizer on my leg from the top thigh to the ankle. Pain is easy peezy. Pathology came back... no cancer, just an annoying benign tumor. Yay!! Now to heal....

June 24th 2011 - ...and yet ANOTHER surgery

This is my last weekend pre-surgery. Feeling fine, able to walk, able to do normal things. After spending the last 3 months basically recovering from one surgery after another, I'm not excited to jump back on the recovery hamster wheel again. I've just gotten to where I feel NORMAL, but that's going to end. Monday I'll spend most of the day at the hospital doing pre-op stuff which I'm sure will include paperwork and the taking of my blood. Then Tuesday is the surgery. I'm going to beg the anesthesiologist to put me to sleep because the thought of getting a needle in the lower back is really squicking me out. Plus I'd rather not be awake during the surgery, something tells me it will be worse when I'm awake.

They have me scheduled for two days in hospital just in case I don't handle the surgery well, but I'm sure I will go home later the same day. My biggest worry right now is how I will get around seeing that I can't use crutches because of my lymph node surgery under my arm. I don't think I can handle a crutch pressing up against my arm pit. That kinda leaves either a walker or a wheelchair. My house is SMALL and I have NO room for a wheelchair. I guess a walker would be the winner, even if it makes me look like a 90 year old.

I really don't want this surgery, but I have to find out what this tumor is, and if it's cancer having spread, then it would have to come out anyways. So wish me luck and I'll post again as soon as I feel up to it.

June 10th, 2011 - New Family member

I've been depressed the past few days. Who knows why, depression... hormones... having cancer... take your pick. I just want to shake myself and say "Snap out of it!!" but I don't know how to do that. Oh and add that I'm beyond broke, and my bills are all behind, after I worked so hard earlier this year to get them caught up. Having surgeries and being out of work to recover really hit my income hard, and now I have another surgery coming up. That's another reason why I'm depressed.

When I met with the orthopedic oncologist, he said he would do the surgery outpatient, using a nerve block and I would go home the same day. A few days ago his office called to tell me the date of the surgery, and the girl said he had me scheduled for two days in hospital. WTF? I'm hoping they just got me mixed up with someone else, but maybe they've decided the surgery would be more in depth? I don't know. I just know that I've been away from the whole "cancer patient" thing for a while and I've actually spent hours a day not thinking about it, but having another surgery looming just brings it all back that I am not normal or healthy. And of course, this little demon voice just keeps whispering about the tumor "it's melanoma... it's spread". I don't want to believe it, and I want that voice to shut the hell up, but it's there and not going away until I have the surgery.

I keep trying to call the dr's office to ask why my outpatient surgery has suddenly morphed into a two day hospital stay, but the stupid girl never seems to be there and I don't want to leave a message. I just want to talk to a human and not have them transfer me or take a message. I wish I could speak to my doctor personally but the odds of that happening aren't very high.

Tomorrow I get to start with a brand new primary doctor since the health center dumped me after finding out I had cancer. Let's see if this doctor runs screaming, too.

The only good news lately is that we got a new kitten. A new family member. We've been ready for a new kitty for years, and we've always said when the timing is right, the kitten will appear. Most of the kitties we've gotten have been from people giving away kittens at the Winn Dixie in High Springs, but we haven't seen anyone giving kittens away there in probably 5 yrs or more. Suddenly last weekend a lady was there with a box full of cuteness. I've wanted an orange kitty forever, but she didn't have an orange one, only an orange and white one. I almost took it, but then decided to wait. Then, not an hour later, I went to the Dollar Store and there was someone there with a box of kittens too! And two of them were orange... Snap! I felt like the universe was saying HERE'S YOUR KITTY! So even though they were girl kitties, I took one.

Her name is Arya, from Arya Stark of Winterfell in the Game of Thrones books. Denise and I both fell in love with the character and it seemed the perfect name. The Arya from the books is a real little scrapper, and this little girl that we have is living up to her name for sure. The boys are not happy at all that there's a new cat in the house, and they've been using my bedroom as the "man cave" but Ari has learned how to barge her way into the man cave which causes lots of hissing and batting of paws. She's pretty fearless and has even smacked back at Bid when he smacked her. She's decided that Deni is her mom and she sleeps on her every night. She's SO adorable, I just can't help but smile when I look at her.

So we are a full house now. When we get a kitty, we have them for life. I'm a little nervous about having a girl, though. I've never had a girl so I don't know if there's anything different about them. I just want to get her fixed asap and hopefully that will be all I need to do.


Please excuse the tv in the background. The voice is Deni.

Love.

May 31st, 2011 - ANOTHER surgery

I went to the orthopedic oncologist on Friday and before they even saw me they gave me a new x-ray. The place is near the UF campus, nice big glass and stone building, marble floors... they even have their own on site X-ray and MRI facilities. So once they read my new x-rays, the doctor (and his "fellow") came in to talk to me. Long story short, what I have behind my knee is an actual tumor. No discussion on how it got there, we didn't really care. What they cared about is with my Melanoma, tumors can pop up anywhere on my body at any time. He did say that the odds of this being Melanoma are very low, but... he suggests I have surgery to take it out so they can do the lab work on it and make sure it's not Melanoma. He said if it was him, he'd have it out. At first I was like "Oh HELL no, I am NOT having ANOTHER SURGERY!!", but then after I had a few mins to think about it, I knew I was going to do it. I mean, come on, I'm still recovering from my last surgery... it was only a month ago, but the thought that this could be cancerous, it would just be stupid to leave it sit there. If they take it out and it comes back benign, then hey, I can relax and heal.

I wish they would put me to sleep to do it, but they won't. Here's the part that I'm not happy about; he said they would give me a nerve block to numb my right leg for the surgery. That's a shot in my lower back on the side near my sciatic. Ok, that sounds PAINFUL, but the doctor assured me it didn't hurt. Yeah, like I'm gonna take the word of a doctor on what's painful? Ha! In the end, I don't have a choice, it has to come out and whatever pain is involved has to be endured.

Deni says I'm just bound and determined to get my lifetime's alotment of surgeries over in 3 months. Yeah, this will be my **4th** surgery since March 14th. It's not a record I'm actively going for. Right when I'm starting to feel better and get my range of motion back in my arm, now I'm gonna be Limpy McCripple stumbling around until my knee heals.

So I'll call them tomorrow and see how soon they want this done. ::sigh::

I am strong, I am brave, I am aggressive, I can do this.

May 26th, 2011 - Here we go again

I had the MRI of the spot they found on my knee when they did the PET/CT scan. At the time we were busy with other surgeries so they said they'd wait until later to investigate it. Now is later.

MRI's in themselves aren't painful, but this one was for me. It wasn't an "open air" MRI machine like I've had in the past. This one sucked me in feet first to within inches of my chin and came right down on top of me. I was alarmed at first when it kept getting closer and closer, but the tech assured me it would stop. When it did, it was so close to my head that I had nowhere to place my arms. While this normally wouldn't be a problem, I'm still recovering from surgery under my right arm and I don't have full range of motion back in it yet. There was literally no where I could place it that didn't hurt. The tech did the best she could trying to help me, putting cushions under the arm, etc, but there was nothing I could do to keep it from hurting. Finally we both just agreed to get on with it and I would have to grin and bear it, so that's what we did. At least this place had headphones so I could listen to a music station. she asked me what kind of music I wanted and I said classic rock, I couldn't think of anything else off the top of my head. In hindsight I should have said pop or modern rock. I swear if I ever hear "One whiskey, one shot, one beer" one more time I'm gonna punch someone in the ear. And that's partly a country song, isn't it? The stuff they were playing was crap. I didn't know what was worse, the music, or the MRI banging away and pulsing away in my ears for 45 mins.

By the time we were done, I was hurting so bad I was almost in tears. As soon as I got in the car I took a double dose of pain pills. I still had work to do when I got home, but I just couldn't do it. The pain meds had kicked in, and I was so out of it that I ate dinner and went right to bed. I slept almost 12 hours straight.

I had a little "Scanxiety" because it seems I always get bad news from doctors lately, so I was prepared for the spot to not just be a harmless Baker's cyst, and I was right. My oncologist called while I was out shopping with mom today and told Deni I have a "perforated synovium"(?) of the knee, which is a perforation of the lining around my knee. He said alot of athletes sometimes get that... I am SO NOT an athlete! I don't remember having injured that knee at all, and it doesn't hurt either. So the onc referred me to an orthopedist and I have an appt with him tomorrow. He's a specialist in orthopedic oncology, and my onc said he would probably want to do some kind of surgical procedure to find out what exactly is going on. Apparently they are being super-investigative because I have Melanoma and it can pop up anywhere, anytime, for no reason at all, and they want to make sure this isn't because of it. Sounds like a biopsy is in my future.

If it turns out to be melanoma... then things get deadly serious. That would bump me up from a stage 3b to stage 4, I would be considered "metatastic", and my survival odds would plummet. I would also immediately become eligible for every kind of chemo they have, and maybe radiation too.

::Sigh:: Just when I think I have a handle on things. Mom is worried again, but it might end up being nothing. Fingers crossed.

May 23rd, 2011 - Decision made.

Feeling much better today. Have made my decision not to do Yervoy trial at this stage and I'm at peace with it. As of right now, I am considered cancer free (NED = No Evidence of Disease), so let's just stay that way. Still have lots of dr appts to keep a close watch on me, but "if it aint broke, don't fix it", in the words of mom.

May 21st, 2011 - Don't know what to do

I'm still undecided about the Yervoy trial. Honestly, if they offered it in Gainesville there would be no question, I'd do it. But the fact that it's 3 hrs away and would require money and a lot of effort to do it... I'm willing to do it, but I don't think my parents are. Mom said tonight that if I wanted to do it, I would have to come up with $500 to pay her for gas and hotel. There's no way. Right now my bank account is overdrawn $200. Having $500 free and clear may as well be a million dollars. I keep reading blogs about other people fighting Melanoma, and almost every one of them followed up their surgeries with some kind of chemical therapy. My mom thinks I'm fine, I'm going to BE fine. I think she just doesn't want to face the truth that this could still not be over, or that it could rear it's ugly head a few months from now, or a year, etc. I know traveling to Tampa to get the chemo would be hard on my parents, they are both in their 70's, and I know it would cause my parents to fight. They argue about everything. Usually my mom wants to do whatever I want and my dad is a grouchy old man and has a million excuses about why we can't do whatever it is.

I know if I did this chemo trial, there's only a %50 chance that I would be getting the actual drug. It's a blind placebo trial. If I went through all the effort and ended up not getting the drug, I would be pissed, but at least I would know I did everything in MY power to make sure the cancer is gone. Just sitting here, doing nothing feels like I'm playing Russian Roulette. Pull the trigger and see what happens. I think everyone in my family was at Defcon 1 the past two months and now they are back at 5. Situation normal, everything's good. Me? I'm still at Defcon 3. I just don't know what to do. I don't. I don't want my family to fight. I don't want my parents to argue or to have to drive me 3 hrs away for treatment. I don't have the money to pay them. I don't want anyone in my family unhappy.

But I'm scared to do nothing.

When they did my PET scan last month before my last surgery they found a spot behind my left knee, so I have to go have an MRI next Wednesday to try and find out what it is. The surgeon said she thinks it's just a "functional cyst" no big deal, but I have this nightmare of her calling me to tell me it's a melanoma tumor. Luckily the odds of that happening are low. Usually when Melanoma comes back it's in your liver, lungs, or brain. But... fingers crossed. I'm still gonna be nervous anyways.

I went to the Davis Cancer Pavilion yesterday where my oncologist is to have my first physical therapy session. Mostly it was a lot of questions and examining and measuring, and testing my range of motion. The lady (thank god it was a female) was super nice, and I had no problem taking my shirt off to show her my scars. She definitely agreed that my right breast is more swollen than the left, and down that side of my torso is swollen as well. My upper right arm is swollen but not too badly. She wants me to wear the hated compression bra that my surgeons made me wear (grumble grumble) and said they may even have to get a binder for my breasts to offer even more compression. Apparently compression is the best way of keeping lymphadema in check. Yes, just call me a little Chinese girl, binding her breasts to look like a boy..lol. It doesn't sound real comfy, either. All I can say is, if they continue wanting me to do these physical torture things, they better give me some good meds. Honestly, I'm taking Percocet now for pain since the surgery, and I don't even feel it. I don't really notice much of a difference. So something stronger would be nice. When I got home yesterday I was so exhausted and after having them move my arm around so much to measure my mobility, it was very sore and hurting. The lady warned me that PT isn't going to be a walk in the park, it will be physical work and some of it will hurt. I told her, after what I've just been through, I think I can handle it. But yeah... more painkillers, please?

Oh and I have to do PT twice a week, which doesn't really thrill the parentals. See, I have no car, so if I go anywhere, they take me. When I have money I try to pay for gas, but right now I'm broke. And I could drive myself, but I'm not allowed to drive for a few more weeks. So I'm sure my dad will bitch about it. But this is only a 1 hr drive, not a 3 hour drive.

I wish there was a high speed train I could take to have my chemo stuff done. Then I wouldn't have any problems.

If I don't do the chemo, I want to be at peace with it. But I'm not at peace. Not right now. I'm scared. I don't know how to be at peace with it. Please send me some good juju, vibes, whatever, that this gets resolved one way or another. I just want to beat this cancer, I just want to do everything I can.

May 12th, 2011 - Lots More Cancer Talk

Yesterday I went to the oncologist to see what he had in mind for further treatment for my cancer. I was afraid he was going to say nothing, and that's pretty much what he did say, to my mother's relief. Now, don't get me wrong, taking Interferon and puking my guts up for a year isn't really at the top of my To-Do list, but on the other hand, neither is just waiting around for the next spot or tumor or nodule to pop up somewhere on my body. I had pretty much decided not to do Interferon anyways because of the severe side effects and because studies show it doesn't really affect long term survival, but there is a clinical trial of Yervoy, a new Melanoma drug, that I qualify for. The only thing about it is that I'd have to go to the Moffitt Cancer Center in Tampa and that's a 3 hour drive away. I have no car so I'd have to rely on my parents to take me, and I just know that would be something they'd end up arguing about. They just got a new car and my dad hates putting wear and tear on their car. I would have to go to Tampa once every two weeks for 6 weeks to get the treatment, then I'd have to go back one final time for a follow up.

Because it's a clinical trial, it means that %50 of the patients will get the new drug, and %50 of the patients will get a placebo. I'd never know which one I got, and after everything it could all be for nothing. Mom is convinced that I don't need further treatment, but I don't know how much this is her feeling confident that I'll be fine, and how much it's her just wanting to say I'm cured and put this whole thing behind her. I can't blame her for wanting to just get on with life, she's been so worried about me, but if a tumor pops up somewhere a year from now, she may feel horribly guilty.

Regardless, I've just decided to reject the Yervoy trial and just do observation which is seeing the oncologist and the dermatologist every 3 months. That's what mom wants me to do, and my onc feels good about choosing this option too, so that's what I'll do. I know the rates of recurrence for Stage 3 melanoma are very high, so I guess I'll have to live with the knowledge that it could come back any day at any time. If you look at the rates of survival, they are anywhere from %45-%60 that I will be alive 5 years from now, and those numbers drop for 10 years. Wonderful.

My family says don't look at the internet, don't read statistics, I'm just scaring myself, but I HAVE to. This is my LIFE and I need all the info I can get. I've spent most of today gathering information on stage 3 treatments and trials, and trying to figure out what to do. Basically I've been in tears all day but no one knows it. Mom keeps saying I'm "cured", I'm in "remission", I should be happy. I'm not. I've read enough online now to know what kind of an animal Melanoma is, and I feel in my gut that it will come back, maybe a year from now, maybe later, but it's the sword of Damocles that will be hanging over my head and there's nothing I can do. Everyone says relax and think positive. It's so hard to do.

My surgery recovery has been slow, but again it's only been two weeks since I had all my lymph nodes out. I've been scared of getting lymphadema in my arm, so what happens? I get lymphadema... not in my arm, but on the side of my breast facing my arm. So I have one normal sized boob and one mega sized. Mom says she's gonna call me "One hung low". Ha, very funny. The Onc looked at it and is setting me up for some physical therapy. Apparently they can show me some types of exercises and massages to make the swelling go down. Yeah, this is me sitting around massaging my boob all day. My underarm incision looks really good, the steri-strips finally came off and I think it's healing nicely, including the small hole where my drain was. The incision on my chest is still being a pain in the ass, but it's healing little by little. I see people looking at me when I go out of the house wearing a shirt with no collar. It makes me curious what they are thinking when they see my scar.

I went into the local grocery store yesterday and before I even got to the check out, they were ready for me. The two girls that I had showed my scar to a week ago were there and they put all my food on the checkout counter for me, and made sure I had help out to my car. They even asked how I was doing, and were super nice. Hey, if my scars can help anyone learn more about the dangers of skin cancer, then that makes me feel happy.

The one good thing that did happen yesterday is I got a new Rx for Percocet because I'm still in pain. Yay pain pills, they do help the healing process.

Through all this turbulent past two months whenever I get upset or scared or worried (which is every day), I go to my "happy place", meaning I put on my headphones, put in my Stargate DVD's and just tune the world out. I went through all 5 seasons of Stargate Atlantis, and I'm on season 5 of Stargate SG-1. It makes me forget about everything for a while. I guess when I'm done with them I'll have to rejoin the real world. Maybe I'll try and watch Battlestar Gallactica online again, wish I had those DVDs.

So that's my life right now. 

Love.

May 5th, 2011 - Surgery Wrap Up II

So I've spent the past week recovering from surgery again at Mom's, and just came home yesterday. I feel pretty good, albeit very sore, and very swollen. I'm not allowed to pick up anything over 10 lbs with my right arm or drive for the next 5 weeks. I have another lovely scar for my collection, and I got my tube removed. Here's a brief recap.

Wednesday I went into pre-op and after getting me situated with my IV and stuff, my mom came back to sit with me. My dad was there, but my neice Heather was there too, so I let her come back instead of my dad. They only let 2 people come back to pre-op. Heather had to come to the hospital anyways to do something for school so she stayed with my mom all day, which was really nice of her. We all talked and made jokes with the staff and each other until they came to get me. It's weird being wheeled on a bed into the OR and seeing all the lights and instruments, and people are buzzing around everywhere getting things ready. All for me. There was music playing too, but I don't remember what it was, just that I was glad the atmosphere was good. This time I was getting to be an old pro, so I put my arms where they could place them on the boards, I didn't freak when they put the compression pants on my legs, and right before they placed the mask on my face, I said "Do a good job!" and gave them a thumbs up.

I woke up in recovery and this time my throat wasn't on fire like last time. I was a bit more uncomfortable, in more pain than last time, but it was still only like a level 4 or 5 of pain. Again they gave me Percocet and I was feeling very relieved that it was over. They took me up to my room on the 5th floor and Mom and I settled in for the rest of the day and the night. Mom was so great, jumping up every time I needed something. There's something really weird about having to ask complete strangers to come help you go to the rest room, but that's what the PCA's and nurses were there for. Mom could only help me so much, she couldn't handle all the IV tubes and things I was attached to. Mom slept on a pull out couch bed thing that she said was horribly uncomfortable, and neither of us got much sleep. By the next morning after not having any good sleep, the anesthesia had worn off and the pain had kicked in, and my body felt so ALIEN to me, I sat there and cried. This was gonna be harder than I thought. Also I felt guilty. It was Mom's birthday and here she was in the hospital looking after me. I was not happy.

They had a physical therapist come see me, and once I got up into a chair I started feeling better about things. She showed me exercises that I have to do every hour to keep from getting lymphadema, and she thought I already had good movement in my arm. Oh and I had a new friend, Jackson, my little drain attached to a tube that went into a small hole near my armpit. They showed me how to clean and strip the tube daily, how to empty it, and to record the daily outputs. Then after my doc came by and took a look at me, she signed my discharge papers. It was barely noon.. yay! So they bundled me in my PJ's and into a wheelchair, and we left. After leaving the hospital I went straight to mom's and stayed there for almost a week. I had to have help showering, going to the bathroom (thank god for moms!!), dressing, doing just about everything. I was given Percocet for the pain, but it wasn't that bad. Apparently this is a common surgery for breast cancer patients because the exercise paperwork and disharge papers had alot about recovering from breast cancer lymph surgery.

By the end of the weekend my drain was barely putting out any fluid so we called the doctor Monday and she had us come in Tuesday. They removed the drain, and I was so nervous it was going to hurt, but the thing practically jumped out onto the floor. I didn't feel a thing, and I was so glad. They looked at my new incision, which looks good, and then at my chest incision, which is being slow to heal. They discovered underlying stitches on my chest that were pushing their way up out of my skin, and this was keeping the wound from scabbing over and healing properly, so they had to do some maintenance. I had to lay down on the table while she took some tiny tweezers and pulled/clipped the little threads that she could find. Ok, this did hurt... but no big deal. She also pulled all the scab off so when she was done my wound was fresh, red, and irritated. But it was apparently better for healing. Now I have to take a shower daily and use a wash cloth to gently scrub the wound to keep dead skin or scab off of it. Today is only two days later and it already looks much better. They DO want it to scab, but not like it was doing before. I know, I'm confused too.

One of the important things that happened that day was I asked the doc how many lymph nodes she removed and she said 25, and the pathology report came back and said none were cancerous. So that means only the initial lymph node that they biopsied had cancer in it. Yes that means that I didn't really HAVE to have all my other lymph nodes out, but better safe than sorry. I'm glad I had them out. So the doctors basically dismissed me as a patient in the surgical area and said they were turning me over to my oncologist to do his part. I'll see him next Wednesday and we'll find out if he wants to do any kind of chemo or radiation or anything. Mom really really wants him to say he's just going to observe me for a year or whatever, but if he suggests actually doing some kind of therapy, I'm gonna do it. I mean I know mom doesn't want to see me sick or anything, but I don't want to play "let's just sit back and see what happens". I'd rather be aggressive and pro-active to make sure the cancer is not only gone, but doesn't come back.

So I'm back at home now, with my bed, my pillows, my kitties, and my Doodlebug. I love being at mom's, but I also love being home. My arm keeps doing all this weird crap, tingling... hurting... itching... feeling good... feeling bad, especially by my elbow. And there are many parts of my upper arm that are numb and will never change. Apparently the doc had to cut two of the nerves in my arm and it may take months for the tingling and other feelings to subside. I don't care about the parts that will stay numb... as long as it isn't near my hand, I'm fine. I can deal with it. My incision under my arm is a long "S" scar, but it was done beautifully and looks like it's healing really nicely. I have just a tiny scab where the tube went in, but eventually I'll barely even be able to see it. I do still feel like I have a golf ball under my arm, there is SO much swelling, but I'll have to be patient. All in all, I feel pretty good. Everyone keeps telling me to take it easy and slow down, but I just want to get back to normal, ya know?

So there you have it, my surgery wrap up. Things are looking up, but I'm still a stage 3 cancer patient. I'm not running around thinking everything is over and fine, but I am thinking positively, and I'm letting myself feel happy... at least until next Wednesday...lol.

April 29th, 2011 - I'm Home

I shouldn't be typing this right now but what the hell. I'm home at mom's healing from surgery and on painkillers. The pain is manageable but I'll be glad to get this 6 week healing over with. Oh and I have my own plastic bottle draining fluids from my incision. Weeee.

The good news is I had the PET scan and the results are clean. This means the cancer hasn't metasticized to anywhere else in my body. So now I have to heal and find out what my oncologist wants to do in terms of chemo or radiation.

This surgery was removing all the lymph nodes from under my right arm. My DOMINANT arm. I'm not supposed to use that arm right now. Greeeeaaat. Ever try to use your other arm for everything? Sucks.

This is about all I can manage right now. Just wanted to let you all know I was home and doing ok.

April 25th, 2011 - Here we go again...

So here we go again. This weeks starts another round of tests and another surgery. Last week they told me the pathologists were taking a second look at my cancerous lymph node to see if the cancers were below .1 or .2cm in size, or over. Apparently the survival rates for cancer below those sizes are better than the survival rates above. My oncologist called me this morning to tell me my size was 1.2 cm which is well over the size so, as he put it, "It's a good thing we're going ahead with the surgery to take out the rest of the lymph nodes". I asked him if this ups the odds that I'll have some kind of chemical therapy and he said he wants to wait and see what the PET scan says tomorrow, but he did mention Interferon again and I'm starting to get nervous. Having the flu for a year is my nightmare. I'll do it if it's either that or death, but they better give me some heavy duty anti puke drugs. I have a feeling I'll be spending the better part of the next 12 months in bed. How this will affect my job is beyond me. I have to just trust and forge ahead.

Tomorrow is the PET scan and I have... let's see... a little under 5 hours left to eat and drink tonight. I'm not worried that anything will hurt, I'm worried about the crap they're gonna make me drink before the scan. I hope it's not chalky. I know I have to sit still for almost an hour before the scan, and I'm hoping they'll at least let me listen to and/or watch my ipod so I don't have to stare at the wall. If they don't let me, I may drive everyone nuts by singing 99 Bottles of Beer on the Wall over and over and over. I told mom she better eat breakfast at her house before we leave because if she stops for a breakfast biscuit on the way to the scan, I may have to hurt her. And god knows by the time I get out of the scan I will be cranky McCranky pants, and will be heading to the nearest McDonalds for FOOD.

I'm also on a chocolate silk pie kick. Guess what I'm having for dinner tomorrow night? That's right, chocolate silk pie...LOL. No really, I'll have some, but I will eat a regular dinner as well. Steaks? Hmmmm.... When you have cancer, you could really give a f*ck about the price. Especially since I expect to be really miserable for the next week or so and not give a care about food.

So wish me well tomorrow and I'll try to post before the surgery. 

Love.

April 20th, 2011 - Update on Surgeon and Oncologist

Yesterday was the two week checkup with my surgeon and my oncologist. As usual, Mom came with me.

First the surgeon. She looked at my incision site on my chest and agreed it looked ugly, but said even though it wasn't healing "pretty", it was healing and it wasn't infected or anything. (I think it looks like a rancid piece of meat with all the yellow drainage). She says this is normal healing fluid that the body provides and is nothing to worry about. She could see where the incision has pulled apart a bit and she was a little suprised that they used DermaBond instead of stitches for the top layer. She said she could go back in and stitch the top layer together if I wanted a prettier scar or if it was really bothering me. Basically it's going to heal either way, it's just up to me how I want to proceed. I asked her what she's do herself and she said she'd probably just leave it alone because I have bigger things to worry about.

Grrrrrreat.

So the pathology results, which we knew, were that my chest wall incision was clear of any cancer, all the margins were clean. But the lymph node she removed from under my arm did have cancer. That automatically moves my stage up from a II to a III, and makes things way more serious. You see, Melanoma likes to take road trips, and the lymphatic system is the superhighway of the body. Finding Melanoma at a rest stop means there's a chance it could have gone sightseeing. We're hoping it hasn't started it's road trip yet and was still busy getting snacks and packing the car. My surgeon was discussing what to do next, and she said there are two schools of thought; the first one thinks that if you find cancer in one lymph node, you should be safe and take the rest. Better safe than sorry. The other school of thought says wait a second, we don't have concrete proof that taking all the lymph nodes will add to the patient's survival. That's the word she used, too, "survival". I saw the look in Mom's eyes when that word was uttered and it was pure terror. Mom was under the impression that we were still in the diagnostic phase and that things weren't that serious yet. Suddenly they are talking about survival rates and things like that, meaning that this is no longer just a little thing to be taken care of, this is life or death.

After discussing it, we decided to go with the first school of thought and yank the remaining lymph nodes, just to be safe.

Before that's done, I'll be having a PET/CT scan next Tuesday. That will tell us if Melanoma and his friends have already started their road trip and visited other sites in my body and settled there. The PET/CT scan entails me getting an injection of radioactive glucose, then I have to sit in a dark room without moving for 30 mins or so. I also have to drink two bottles of some nasty stuff. Then I will have the scan, lying again motionless for about 45 mins. Fun, annoying, but not painful. It's the little things I'm greatful for.

The surgery will be the following day, next Wednesday. The current incision under my arm has healed amazingly. It's so small it looks like a cat scratch. As the surgeon explained, this next one will be quite a bit bigger, in the shape of an "S" and go from the top of my armpit down and around the side towards my back. I will stay overnight in the hospital, and I will have a drain installed. The drain will stay in place for 1-2 weeks depending. I'm scared of this surgery because of the complications. On the inside of my upper arm there is a risk that the nerves will not heal and I may never get the feeling back. There is also a risk of lymphadema which is my real fear, that fluids will build up and my arm will swell to several times it's own size. If that happens I will have to wear a compression sleeve on my arm, and I may have to wear it for the rest of my life. I told her I'm an artist, will this affect my hand movement, and she said no, so that's a good thing. Apparently the day they release me from the hospital, they will send in a physical therapist to talk to me about exercises for my arm to keep the lymphadema at bay. Again, no promise that this will improve my survival odds, but better safe than sorry.

As soon as she got done explaining all this, I think my mind just imploded a bit and I started to cry. It was alot to take in. Mom started to cry too. There are alot of things I can handle, but seeing my mom cry, especially because of worry over me, is something that breaks my heart. Not to mention my surgery will be the day before her birthday. She's planning on staying the night in the hospital with me and bringing me home the next day, but I feel guilty. Happy Birthday to her. The next day, Friday, my neice graduates from nursing school, so I won't be able to go to that. Deni is going to stay with me so Mom can go instead. And that's another thing. The first surgery was hard enough on Deni and I because I stayed at mom's so she could take care of me. Deni and I were both miserable being apart. Now we're going to have to go through it all again. At least this time we've discovered Skype video chat.

So after the surgeon slammed us both with the emotional hammer, we went to scheduling to schedule the surgery, then over to the cancer pavilion. There's a Subway there so we had lunch and tried to calm down a bit. I went over to Nuclear Medicine to schedule my PET scan but they were out to lunch and by that time it was time to meet with my Oncologist. There really wasn't much to discuss with him as far as treatment. He wants the results of the PET scan too, before we decide on a strategy. He did mention Interferon, and I said "I thought you didn't like Interferon" at which point he said well, I think we have other options available before we have to think seriously about that one. Which is good because having the flu for a year... yeah, not so much on my "to do" list. I'd much rather have radiation. He did mention Yervoy which is a new drug for Melanoma that shows promise, but it's only being used for advanced stages of Melanoma, so if he puts me on that, then I'll know I'm probably a stage IV at that point.

After we met with him, it was back down to nuclear medicine to schedule my PET scan. I guess there was a red flag somewhere in the computer system because I had to go see a financial person who asked me a bunch of financial questions. I told her I'd already gone through this two weeks ago with someone else and she acted like it was the most important thing in the world that I get financially "Approved" for the PET scan. She was so uncaring and also had me down as "Indigent" because I have no insurance. I couldn't help it, my eyes teared up, I had just had enough. I felt like telling her "Lady, do you have any idea what I'm going through? Do you know how little I give a fuck about your stupid paperwork?". I mean really, I'm already in for over $10,000. To me, they're just numbers on a screen, or a paper. I'm more concerned with SURVIVING right now. In the immortal words of Ripley in Aliens, "They can BILL me!!"


I've been going to the Melanoma Research Foundation boards and talk to other people who've been through the same thing and they're so great. They tell me exactly what to expect, how much it could hurt, etc. And there are many many stage IV patients that have been stable for years now, so I'm trying to think positively. I have people I don't even know praying for me, and the outpouring of love that I've gotten is just overwhelming. I always figured if anything happened to me it would only upset my family, but there are people from all over thinking of me and it brings me to tears.

Yesterday was a day for tears...and xanax. It was a day to buy a chocolate silk pie and eat some before dinner (I did), and it was a day to have steaks for dinner, damn the cost. (Again, I did). Money? Who cares. It's just paper, or coins, or ticks on a credit card. So yesterday I was beaten down and curled up in bed. Today I'm up and taking a deep breath and gathering my strength for the next battle ahead. I'm not there yet, but I will be by next Wednesday.

In the meantime, nothing is allowed to upset me or stress me out. Only happy things to exist around me. So let it be said... so let it be done.