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?