Merry (Late) Christmas

Just wanted to write a quick post and a little update......

First of all, Merry Christmas, a day late! I had a very great Christmas, and I'm very spoiled for an almost 35 year old! It was nice to spend time with family, and I love watching the kids (little sister and nephew) open presents. My Christmas present to me will be a new iPhone, because Friday night I dropped mine and smashed it :( Luckily I was planning to get a new one anyways, so it could be worse. 

I couldn't help but think of the families who are not having such a merry Christmas this year. The families who lost loved ones in Newtown, CT for sure. A family I know that lost their unborn twins. And the families that are likely celebrating their last Christmas with a loved one due to melanoma, or who are missing those that were lost this past year or two. Of course there are many more who are affected by other types of cancers and other illnesses, and my heart goes out to them as well, but I feel especially bonded with those affected by melanoma. Those who are doing well give me hope for myself, and those who aren't doing so well make me more thankful for every day that I am healthy.

Speaking of being healthy, last post I said I'd hit the "reset" button on melanoma, and I did, but it was nowhere near as bad as I thought. One was just atypical cells, and the other was consistent with melanoma "in situ" which was still in the top layer of skin. My oncologist said it really isn't even melanoma yet, and might not have been for years and years. For the record, this is the scar made by melanoma caught at its absolute earliest: 

This was taken right after I took the compression bandage off, and it will get much better, but this is just one reason early detection is important! I know at least one person would see this and think, "Well, if that's what they do, then I'm not going to the doctor! I don't want to be cut on!", and that seems logical, that's what I would've thought too. BUT, melanoma doesn't shrink, it grows, and the necessary scar will grow too, along with the necessary tests and biopsies and medical treatment, and likelihood of death. You can see my original melanoma scar at the top of the picture, it healed pretty well, but the important part is that so far it hasn't spread past my lymph nodes, and hopefully it never will.

The great news about this new scar is that it was pretty much pointless! There were no atypical/precancerous cells left over from the original biopsies on either place. They have to do an excision to make sure, so no matter what, they were going to have to cut me up a little, and it's definitely a better safe than sorry scenario. 

So, to wrap it all up, hope you had a Merry Christmas and have a Happy New Year, but keep those in mind who aren't having such happy holidays. And make your New Years Resolution to take better care of yourself - and for once, keep it!! You don't have to lose 20 lbs, work out 6 days a week, eat all organic raw vegan, just be good to YOU! Eat something that grew out of the ground for once, maybe take a walk, get your regular checkups at the doctor, smile at people, play with your kids, laugh!!! (PS, this was Melanoma Melissa talking, Personal Trainer Melissa says go ahead and lose those extra lbs, eat vegetables and lean protein, and plan to work out 6 days a week so you might actually get in 4-5!)

Reset

Today I hit the melanoma "reset button". 2 weeks ago at my 3 month dermatologist checkup, I had 2 places biopsied, & found out today that 1 of them was malignant melanoma. It's "in situ" which means it's still in the top layers of skin, & more easily taken care of than last time. It'll require an excision of about a centimeter in diameter, plus some extra since they can't close up a circular incision. The 2nd one, on my leg, was atypical & they'll go ahead & do an excision there too (if this is done next week it's gonna ruin my 1/2 marathon for next weekend!)

The biggest lesson I learned from this is, we have to be our own advocate. I wasn't particularly concerned about either spot, but pointed them out to the doctor & he biopsied them because I'd noticed them & because of my history with melanoma. The doctor told me that he wasn't concerned about them either. I can't help but think that had I not pointed them out, melanoma could be spreading over the next few months, & I could have been in for more surgeries & lymph node biopsies. If you feel like anything is wrong, with your skin or anywhere else, insist that it gets looked at! Doctors are human & capable of making mistakes just like the rest of us, trust your instincts!

The clinical trial I'm participating in might also be affected by this new development. I've talked to the nurse & she will notify my oncologist & they'll have to see what's gonna happen based on trial protocol. I'm hoping I can continue, but I also know that whatever happens, I'll be fine. I believe everything happens for a reason, & if I have to stop the drug treatment, there is a reason for that. All drugs have side effects, & I've been fortunate enough to not have any so far, but there's no telling what's ahead. God may just have different plans for me, & His are most definitely better than mine :)

Scars

Confession: When I first found out that I might have melanoma, my biggest concern was having a scar (second was missing workouts). Not my health, because, you know, it's "just skin cancer", but having a scar from the melanoma excision. For the record, the scar is no big deal at all, here's what it looked like when I first had the steri-strips removed:

It looks a little gross (a friend helpfully pointed out that it looked like something from The Matrix was under my skin), but it really didn't even bother me, and over a few weeks, it flattened out to look like this:

Just to clear my name, once I was made aware of the severity of melanoma, I was no longer concerned about the scar! Something about PET scans and lymph node biopsies kind of took over the top of the list of things to worry about :) Fortunately, at the time, everything was fine, and I was back in the gym in no time - I had orders not to sweat for the first 2 weeks until it was time for the steri-strips to come off (not sure how I was supposed to strictly follow that rule in Florida in July!), so I'd do cardio with a fan pointed at me so I wouldn't sweat too much. 

Anyway, as you probably already know, the melanoma did end up spreading to my lymph nodes and I had another surgery this past August. I'm still working on getting back to where I used to be in the gym, the lymph node removal has been harder to recover from, and I have a lot of tenderness and numbness from my lats (the muscles on the side of your back) to my triceps (back of arm) on my left side. So during my workout the other day, I was stretching my arms over my head, and I noticed how you can barely see the scar under my arm; it was a great scar to begin with (thanks Dr B!!), and the redness has mostly gone away. Inside, I can definitely still feel the effects of surgery, but someday, that's going to go away, and I'll be back to normal. But that scar will still be there, reminding me of what I've been through, and reminding me that life is precious, and tomorrow is never guaranteed, no matter who you are. I think emotional scars work the same way. When something happens to us emotionally, at first we're really sad, and it's like a fresh wound that reminds us of its existence every moment of every day. Over time, those wounds heal, and eventually, we go back to life as normal. But we're still forever changed, and carry those scars with us for the rest of our lives. I don't think we need to be scared of these scars though. They make us who we are. So even though initially I was so worried about having a scar on my shoulder, I've realized, the scars in life make us who we are. Every scar, whether physical or emotional, means that we overcame something difficult. If it doesn't make you a better person in some way, it's wasted, but if you learn and grow from the scrapes and bruises that life throws your way, those scars aren't for nothing, and we can even be thankful for them. Or at least thankful that we made it through, thankful for having strength that we didn't even realize was there. And since I'm finishing this post right before Thanksgiving, that seems pretty fitting! No matter who is reading this, you have something, probably very many things, to be thankful for, and I hope you don't need a food filled holiday to remember that! 

Have a very happy and thankful Thanksgiving, and please keep me in your prayers, Friday I have ipi treatment #2, and I'm hoping to continue without any side effects. Still, I think I'd rather be at Mayo Clinic all day than out shopping on Black Friday!! :)

More Blogs and Randomness

Ok, I got lazy the other day and didn't add a lot of the blogs I keep up with, so here's more, for those who might be interested:

Defying Melanoma

Black is the New Pink

Live In Our Skinz - From here, you can also visit the UV Skinz store for UV protective clothing!

Pretty in Pale

Em and Michael's Blog - also visit their "Stories of Survival" page!

Melanoma and the City

Melanoma Sucks!

Miss Melanoma

Tan Today, Tumors Tomorrow

Jillian's Journey with Melanoma

All of these blogs (and the ones I listed last week of course) have helped me to feel not so alone - don't get me wrong, I have a great family and great friends who have been there for me 150% and I've never felt "really" alone during this time, but when it comes down to it, no one really understands unless they've been there. Learning about their personal experiences with melanoma and treatment, and reading about the people they've reached and the positive attitudes they have and even the hardships they've faced has been an amazing blessing for me, and I am thankful that each and every one of them decided to blog so that melanoma newbies like me could learn as much as possible about the personal side of this disease! (Yes, I just used the word "newbie" - ugh, no one sounds cool saying that unless they're Dr Cox from Scrubs)

Warrior Eli Hoax Group - this is not a melanoma or cancer related blog, but it's dedicated to uncovering truth about a specific group of people who claim to have illnesses, or have children/family members with illnesses, either for the attention they receive, or money, or both. It's heart breaking that someone would feel the need to do something like that, but it's reality, and with the internet, I'm sure it's much easier to pull off, and I feel like we should all be aware of this. It's called Munchausen by internet - you may have heard of Munchausen syndrome, where one pretends to be sick to get attention, or Munchausen by proxy, where one pretends that their child is sick in order to get attention. I actually only knew about Munchausen because of Eminem (rappers can be educational you know!). I think we all know that the internet allows for a certain amount of anonymity, and we all have to be more careful about our interactions online with those we don't really know. Although these people might be physically healthy, they have a mental illness, and they need help. Be careful who you befriend online!

That leads me to another thought; It's really easy to sit back and judge others for the things they do or say that we don't agree with, and sometimes those things are clearly wrong - like in the case of the people who claim illness in order to get attention or money. And some people really are just awful, but who knows what they've been through to make them that way? I think that overall, we could stand to have more compassion and empathy for others. I'm pretty sure Facebook hasn't helped, because now everyone has an outlet for their hatefulness. Some days I'm just appalled at the judgement and negativity I see there, especially this past election season. I've got a newsflash for you, and I know this may be shocking, but you aren't always right! And the person who disagrees with you isn't always wrong! Anyway, that kind of went off on a tangent, but the point is, even when someone is clearly wrong, we can still have compassion and love for them. Jesus died on the cross for ALL of us, not just the ones who fit our little profile of what a "good person" is. We are all sinners, and God doesn't put our sins in categories like we do. Fortunately, He can forgive anything, and if He can, then we should at least try. I'm not saying any of that because I'm so good at being understanding and forgiving, I'm saying it because these are the things I tell myself on a regular basis, and maybe one day it will be natural for me to be a forgiving and compassionate person.

So, enough of that. Just maybe try to be a little nicer, especially on Facebook, ok?? Be kind to others, and also, be kind to yourself, and take care of your body, it's the only one you've got!

PS - absolutely no melanoma related news, no news is good news there!!

Other Blogs and Update

There are a lot of melanoma related blogs that I read, and since I still don't know how to make a blog roll thing on the side of my blog, I thought I'd share and link to some of them in a post.

Attitude of Gratitude - this blog is written by a wonderful woman who is a Methodist pastor, and is the same stage melanoma as I am - 3b. I dare you to read her blog and not be blessed by something she says, whether you are affected by melanoma or not. She is an inspiration to me and I bet she will be for you too!

Adventures With My Enemy Melanoma - this girl is a big part of the reason I started blogging about my experiences, and decided to share with my Facebook world what I was going through. I felt like it needed to be private, but when I started reading her blog, I realized it was my responsibility to bring melanoma awareness to my little world. 

Welcome to The Hotel Melanoma - first of all, I love this guy because he's a stage 3c survivor of about 9 years now, so that gives me great hope. Secondly, at the end of every blog post, he takes a song and changes the lyrics to be melanoma related, and I think that's pretty funny. 

There are several more blogs that I keep up with, but those are my favorites, and one day I will figure out how to link to all of them from this blog! 

If you want to learn more facts about melanoma, here are 2 great websites:

Melanoma Research Foundation

Melanoma International Foundation

Update!

I may have already mentioned this, but I finished radiation almost 5 weeks ago. I've STILL got skin discoloration on part of my back, and I had a bad itchy rash for a few weeks but that has finally gotten a lot better and has almost healed completely. Really soon I'll be able to use self tanner again, I am very pasty white right now! And I know that's ok, but I'll be happy to have a little color back - I wear shorts at the gym and I'm worried I might blind someone :)

I also started the clinical trial last week. On Tuesday 10/30, I had my first infusion of ipilimumab, or ipi, or Yervoy. Everything went very well, the nurse blew out my vein when she tried to start the IV, but it was no big deal at all, and the 2nd try went just fine, and I didn't even have any bruises. Everyone was very nice, and I had a good time just hanging out with my parents for a few hours.

A little education on the drug I am getting - a lot of people call it "chemo", and I do get the drugs in the chemo suite at Mayo, but it's really kind of the opposite of traditional chemo. From what I understand, with my limited knowledge of medicine, traditional chemo basically kills everything, good and bad, and that's why patients get so sick, lose their hair, etc. Well, chemo doesn't work for melanoma, so the drugs I am getting try to boost my immune system so that I can fight off any cancer cells that might be lurking in there. I really like the idea of that, although I don't like that melanoma is so different from other cancers, and not as easily understood. And right now, the only way to get the ipi at my stage is to participate in the clinical trial and hope you get randomized into the right category. If you have stage 3 melanoma that is inoperable or stage 4 (melanoma has spread to organs), ipi is approved by the insurance companies, but I hope that very soon it's approved for earlier stages, and I think it's really cool that I can be part of that. I am also extremely thankful that I didn't get my first choice in the clinical trial - I wanted the high dose ipi, because I figured the more, the better, but my oncologist told me that he is not comfortable with the high dose, and has only had 1 patient get it, and he had to take them off of it because the side effects were too bad. And since it's a trial, once that patient was taken off the ipi, he was off, they couldn't just lower the dosage. Just another reminder that sometimes we don't see the whole picture, and our plans aren't always the best, and I believe that God was in control there. 

So anyway, I got the ipi on Tuesday, and for the next few days I felt a little extra tired, but that was it. The 2nd treatment is in 2 weeks, and the side effects might get worse, but hopefully nothing major. The good news is, I have treatment in November, December, January, then no more for 12 weeks after that! It's been great to be able to get back to a normal schedule, with all those doctor appointments, I was missing a lot of work and not in the gym as much as I'd like to be, and really, just constantly stressed out about what was going to happen with the clinical trial. So now, I'm getting back to doing personal training a little more, and working on gaining back the strength I'd lost after surgery, and I can definitely tell that I'm not as stressed out now! Well this is all I've got for now, hopefully I'll have more positive updates soon!

So It Begins....

I'm sitting at Mayo waiting to have MORE blood taken for my first immunotherapy treatment this afternoon. This is my first time posting from my iPhone app so if this post is weird, I blame the app! :) Yesterday I finally got the long awaited news that I'll get ipilimumab and not interferon in the clinical trial, which was the news I was hoping for. My treatment schedule will be every 3 weeks for 4 treatments, and then every 12 weeks after that, for about 14 months total. It'll be a whole day of Mayo Clinic fun every time, with blood tests in the morning, then an appointment with my oncologist, Dr J, & then the treatment itself which takes 3 hours total. But at least it's not very often, and the bad side effects should be minimal. There are of course nasty side effects that can occur, and they'll monitor me closely and pull me off the meds if I have serious side effects.

I actually feel ok about all this, I thought I'd be an emotional wreck today, but I'm not, I slept great, and I really feel pretty good. From what I've read, I shouldn't really have any side effects from the first treatment. I might be a little tired and/or nauseous but that should be it.

Well that's all I've got for today, hopefully there will be nothing else to report!

Hillary Quinn Kind

Hillary Quinn Kind lost her battle with melanoma this past Sunday, just 2 days before her 26th birthday. She was featured in this year's Stand Up 2 Cancer, and I had heard of her, but didn't watch her video segment until today when I learned of her death. She was diagnosed when she was about 17, so please please please don't ever think you're too young for melanoma, or anything else! I don't share this to scare or worry anyone, especially those who are already worried enough about me, but to try and do my part to raise awareness for something that people still don't take seriously enough. If you smoke, it's pretty much accepted that cancer is a big risk, but if you tan indoors or out, no one really understands that it's putting you at greater risk for melanoma. That was me too, because my own mom had melanoma, and I continued to tan. And I can't say I don't miss it, to be honest! My biggest piece of advice though, is to see your dermatologist at least once a year, and if you feel like a mole needs to be checked, insist on it, whether your doctor agrees or not. There are plenty of cases when melanoma doesn't "look" like melanoma, and it's a sneaky, sneaky cancer. As great as your doctor may be, and as many people as you might have who love you and care about you, YOU are in charge of YOU and your health, no one else. One of my biggest regrets is that I didn't see a dermatologist after my mom had melanoma, or at least when I noticed the weird mole on my shoulder. I don't dwell on it, because it's in the past and I can't change it, but I most definitely would if I could. Even at an early stage, melanoma can progress, but of course early detection is important, just like any other cancer. Hillary's wish was that something good would come out of her having cancer, so today, do something good for yourself in honor of this very brave and very strong young woman!