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!

Choices

I've been thinking a lot lately about choices. Not the choices we make to do one thing or another, but the choices we make about how we react to things we have little or no control over. This past weekend, I decided to run the Marine Corps Half Marathon, even though I hadn't trained for it. I'd started training back in June or July, but got sidelined because of my surgery in August, and basically just gave up on being able to do it. But the previous weekend, I ran 7 miles, after 2 months with no running, and it wasn't bad. So on a whim, I decide as long as the radiation treatments that week didn't hit me too hard, I was gonna run the Half. Well, 13.1 miles is a long way to travel by foot, and I was NOT ready for that distance! Obviously I had a choice to stop running/walking, and give up, but to me, unless I broke a bone or something, that was not a choice. It was bad enough that I was stopping to walk a lot, if I'm going to run a race, I want to RUN the race! But I got over that real quick and started walking every few minutes, and towards the end, walked even longer with a friend who was working on his first half marathon.

The point of that long story is, during the race, there were a lot of times I thought to myself how dumb I was for doing this, how unprepared I was, how I should've just done the 5k instead of the half marathon, and in general, this was probably the dumbest decision I've made in a while. But, every time those thoughts crept into my head, I CHOSE to instead thank God that I was able to do this, that it took 10 miles before the pain really set into my legs and my feet started killing me. I thanked God that I was able to be up and moving around for 3 hours (yes, it took me over 3 hours, this was my 5th half marathon and my slowest time by far - but who cares?!). I just thanked God for the ability to put one leg in front of the other (over 31,000 times - that's a lot of steps!).

It's not always easy to find good in every situation, but it's worth a shot. We don't always have a choice about things in our lives, whether it's a job we dislike, a traffic jam, a divorce, illness affecting loved ones or ourselves, a difficult person in our lives, but we have a choice in how we react to that situation or person. Our attitudes can't change the situation we're in, but it can make things easier to deal with, and make us more pleasant for others to be around. You never know how a kind word or smile can affect someone else, I come across other patients a lot at the many doctor appointments I've had lately, and just a short conversation in the elevator can make my day sometimes. I can't imagine how my days would be if I allowed my circumstances to take control over my attitude, I would be a really miserable person. Trust me, there are times I do feel miserable, and there are plenty of times I don't react the way I should, but I do make a conscious effort to be above my circumstances and find joy and peace in everything.....even running/walking 13.1 miles :)

It seems like negativity is everywhere - if you doubt me, read your Facebook newsfeed! So why not try to be positive in this world of selfishness, hatefulness, and ugliness? It seems like a lot of people, even (or especially?) Christians, are fueled by hate - we're supposed to hate sin but love the sinner, and sometimes that 2nd part seems to get lost. We are going to have to deal with difficult people and difficult situations, that's life. Choosing to whine and belittle others only makes you look spiteful and unattractive. Why be "grumbly hateful" when you can be "humbly grateful"? (That was for you, mom).

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Update on Radiation - today was my 5th and last treatment, I have had very minimal side effects so far, the skin on my left side is a little tender and pink, and that's about it! The people there are great, and I'm going to miss them a little!

Also - this week I'll have my blood work (that was today & luckily this time they knew what they were doing & I don't have a huge bruise on my arm!) and scans done, both as a routine check up thing, and as prep for the clinical trial. I am hoping and praying that: the scans etc come back all clear, no new issues, I get into the clinical trial, and get the new medicine, and high dosage, AND that the side effects from the drug treatment are minimal, and of course that it works, even though I believe my true Healer comes from above, and is not in drug form!

Fear NOT

I was reading my short daily devotion today while waiting for my first radiation treatment and this was today's reading:

If you have a problem with fear and worry, I can tell you exactly where it came from! Christians who have downloaded fear and worry onto their mental hard drive get their primary information from the devil himself. Let me be blunt here - you are listening to the wrong voice! Press the mute button and open the Bible!

The Greek word for "fear" in both the Ancient Hebrew and the Greek, implies a fleeing or a running away from something or someone. So, when the Bible instructs us to "fear not" it is in essence saying, "Don't run away!" Very few of us actually run away physically from a situation that frightens us, but where we actually run away is in our minds.

The words "fear not" appear in tandem at least 144 times in the Bible! And when the Bible says "fear not," it means do not run away. When you are afraid or worried, rather than running away, you need to run forward into all that God has for you. The reason that Satan tries to give you a spirit of fear is so that you will run away from the blessings and power of God. The opposite of running away is pressing forward. When you are a son or a daughter of the Most High God and know the reality of serving Christ, you press forward. Do not linger over another thought that comes from the father of all lies but press on toward the goal!

If you are running scared, you are running backwards into your past and away from the arms of God. If you are pressing ahead, you are moving toward the prize of the upward call of God in Christ Jesus!

Knowing that you have not been given a spirit of fear from God, what has God given to you? He has given to you a spirit of power and love and a sound mind. Your mind needs to receive the message that you are one powerful chick! Did you know that the devil knows that you are powerful? He just doesn't want you to know that you are powerful! Declare it today - out loud - and unafraid:

I will not run scared but I will press forward into all that God has for me!

***This was written by Carol McLeod for Just Joy Ministries***

This was one of those God moments where I read just the right thing at just the right time. I was scared, and wanted to run away, but He reminded me that fear is not from Him, and He gave me the strength I needed to face my fears.

And so far, so good, radiation treatment #1/5 went just fine, it was over before I even realized it started, and I'm back and work and feeling fine! (Except I feel like I'm getting a cold! Boooooo!! AND I'm waiting for my radiation induced super powers to kick in, I haven't gotten any yet)

Blah Blah Blah

As it stands right now (which I've learned can change at any moment), tomorrow (Thurs) I officially become a "cancer patient". I haven't felt like one yet, even though I've had appointments with oncologists and had surgery to remove said cancer. But tomorrow is my first radiation treatment and I feel like that changes everything. Part of me is so resistant to radiation and drug treatment, and I think it's because I feel like this forces me to admit that I am a cancer patient. I don't look like one, and I don't feel like one, and I really hope I never do (as selfish as that may sound), but I am.

I really have struggled with the decisions to move forward with treatment. It's not an easy decision, because treatment doesn't guarantee anything. I could do no treatment and be fine forever, or I could do anything and everything, and have recurrance. So I go back and forth between wanting to just leave it all to chance, and wanting to do everything I can. I feel like I'm wrong for even thinking about not doing anything, when I have the opportunity to and others don't. But I also don't want to reduce my quality of life, I want to be able to do all the stuff I could do (and more) before surgery and treatment. I want to run the Thanksgiving 1/2 marathon with my Daddy, I want to torture myself through 12 miles of mud and obstacles in the Tough Mudder in December with my ATF Lakewood crew, I want to run the 26.2 with Donna (but only 13.1 of it!) in February in honor of those I know who have battled breast cancer. I can't even imagine not running the River Run in March with my ATF Jax run club buddies. I want to jump up and grab the pull up bar and be able to do pull ups again. And of course I want to have fun & hang out with friends & family. And then I think that these are silly concerns next to the possibility of facing cancer again. And then I think that there's nothing wrong with wanting to live my life and do all these things. So basically, my brain is a huge mess right now! (more than usual.....)

Bottom line is, there's no way to know for sure which decision is right, so I have to just make the best choice I can, and at this point, I feel like I should take advantage of the opportunities I've been given. I've prayed about it, and although I'm not happy about having to do the radiation and immunotherapy (drug treatment), I feel ok about the decision. I'm becoming a little less freaked out about all of it, at least right now. Talk to me again tomorrow when I'm about to have the first treatment, and later in Oct/early Nov when I'm getting ready for immunotherapy :-)

You Never Know

I'm not in a great mood today. There's no particular reason, I just have days where I feel like the weight of everything is pushing me down and I just want to go back to bed and try again tomorrow.

I said that to say this: You never know what someone else is going through or dealing with at any given moment. Whether they are a stranger, an acquaintance, someone you know from work or school, or a family member or friend, you don't know everything, and in some cases, you don't know anything about them. I've thought about that a lot lately, and I don't think going through personal hardships gives you the right to treat anyone badly, but sometimes people just need a little extra grace. Most of the time, good mood or bad, I still have a smile on my face, and I appear to be pretty healthy - and I AM pretty healthy! - and no one would ever in a million years guess the things that I am stressed over. That's really helped me to realize that when we encounter other people as we go through our day, we have no idea what battles they are facing. So rather than focus on the negative, or think to ourselves (or say out loud) how stupid or inconsiderate or ignorant someone must be, maybe we should have compassion for others instead.

To sum it up: "Be kind, for everyone you meet is fighting a hard battle" - Plato

And, in reference to my bad mood: "When I'm sad, I stop being sad and be awesome instead" - Barney Stinson, How I Met Your Mother :-)

PS - I got a call from Mayo Clinic today letting me know that they took care of the whole insurance/clinical trial thing, and it will be covered. I didn't even talk to my oncologist about it, just mentioned it to my Radiation Oncologist and she was on it! Not only did someone in the finance department call, my oncologist called me as well. I really love those people. Of course this means the decision is back in my hands....

Decisions, Decisions

So, I posted Friday that I'd found out that the insurance company wouldn't cover my participation in a clinical trial, and I was at peace with that because I felt a difficult decision had been made for me. Well, Friday afternoon at my Radiation Oncology appointment, Dr. V, my "RadOnc" told me that the insurance company would automatically deny anything they can, and that Dr. J, my regular Oncologist, could probably open those doors back up for me. Which means the decision could possibly be back in my hands. Sigh. I'm terrible at making decisions, and I have documentation to prove that :).  So I am praying, and ask you to pray with me, that God either keeps this door shut, or continues to give me a peace about NOT pursuing drug treatment. I know drug therapy can be necessary, but my choices there are so limited. A well known drug that has a 3-5% success rate, or a lesser known, newer drug that probably will work better, but who knows what kind of long term side effects it'll have? And it definitely has some undesirable short term side effects. And nothing is a guarantee that the cancer won't come back somewhere else.

This is a huge problem with melanoma, the research is so limited, and most people, including me a short time ago, think it's no big deal, it's just your skin and you just cut that part off and move on. Not true! Your skin is your biggest organ, and melanoma is a sneaky little devil that travels through your body and hangs out just waiting to attach itself to an organ and start growing (that's not a complete medical description, that's Melissa's version). So anyway, there's not been as much research on melanoma as other cancers, and there's no tried and true treatments. (That is not to imply that other cancers are easily treated, or have guaranteed treatment, they obviously don't, but a lot of them have more research behind them)

I go Friday to schedule my radiation treatments (was supposed to be last Friday, but they scheduled the appointment for the wrong thing and I basically wasted a trip, good thing I'm so impressed with Mayo otherwise or I would have been really upset!) and then next Monday to talk with Dr J about this clinical trial deal, and regardless of what I decide, we'll be doing follow up scans soon.....fingers crossed for good results, I have a feeling my life will be in 3 month intervals for a while!

Thanks for the love and prayers, hugs and encouragement :)

Count Your Blessings

That old hymn popped in my head yesterday, and even though it's fairly cheesy, it has truth to it. We all have many blessings to count, no matter who you are or what you're going through. So today, I'm going to count my blessings. This list could be infinite so I'll just categorize!

1. My God, faith, and salvation. First and foremost, I believe God created each and every one of us for a purpose, and whenever I get stuck on the negative things in life, I try to remember that He is right there with me, and growth comes from the hardships. And everything else on this list is a blessing straight from God. 

2. My family. I genuinely love my entire family more than I can say. Whether we're related by blood, marriage, whatever, it doesn't matter. I love each and every one of them and am thankful that they are part of my life, whether I see and talk to them all the time, or not so often.  

3. My friends, old and new. I have had an insane amount of support from others, some of them I've known pretty much since birth, some that I barely know or don't know at all. They are probably all sick of hearing me talk about myself, (I know I'm sick of hearing me talk about myself!), but they don't complain, and even friends who are going through problems of their own take the time to ask about me and how I'm doing.

4. My overall health. Even with the whole cancer thing, I'm relatively healthy. I never had any major health problems in the first 33 years of my life, and being side tracked a little by all this reminds me that I'm so very lucky to have a healthy body and not have to live with chronic pain or disease. As a side note, today I'm thankful for sore muscles! Because it means I was able to work out. When I was in the middle of it, hating life, I reminded myself that I should be grateful that I CAN do this stuff!

5. My job. I have a good job, with good health insurance, and I have a great boss, who has been so understanding whenever I've had tough times to go through. I'm not one of those people who just loves my job, and can't wait to go to work, but I cannot even express how grateful I am for the job and for the person I work for. The rest of the guys I work with are pretty alright too :)

6. My 2nd job. I work part time at 2 different gyms, teaching cycling class and training clients. I do actually love this job, and love love love the people at both places, the staff, clients, and members. Every time I walk through the doors, I see plenty of smiling faces and I leave feeling great, not just because of the workout, but because the people are so awesome. Some of my personal heroes are people I've met through the gym.

7. All the material stuff. I try to remember to thank God on a regular basis for the fact that I woke up in a comfy bed, in a nice apartment, with A/C (or heat, during those 5 times in Florida we actually need it), had hot running water, put on nice clothes, got in my nice little baby Jeep that I love, and had a job to go to, that helps to provide all these little things I take for granted. Oh and food. Can't forget food. Not sure if that falls under material things, but I'll add it here anyway. Love me some food. It's easy to forget that there are those who don't have these comforts.

8. Closed doors. I found out yesterday that my insurance won't cover my participation in a clinical trial, which was what I was banking on to hopefully get a new cancer treatment that isn't widely available yet. It was already a big gamble, would I get into the clinical trial to begin with, would I get the new medicine that I wanted, or the old standard of care medicine (with a 3-5% success rate - boo!), would the medicine actually work, would the side effects be too awful, would there be more unknown long term side effects? Question after question. I was immediately upset when I found out I probably wouldn't be able to do the trial, then I just felt peace. Honestly, I wasn't 100% for the treatment, and every time I thought about them starting the IV and injecting me with chemicals, I had this sinking feeling, and could envision myself calling it off at the last second. I prayed the other day that if this wasn't the right thing for me to do, that God would just close the door, and after my initial reaction to the news, I realized that this could just be His way of doing just that. I've thought a little bit about other possibilities, but I'm just not at peace with the drug treatment. It's a hard call to make, and I felt like if I COULD get treatment, I owed it to myself and everyone who loves me to do it. So I feel like this choice might have been taken from me, because I was making the wrong one. There's no way to know for sure, but life is full of uncertainty right?

So, if anything could be taken from this, I guess it's that we all have our own things to be thankful for, and sometimes what might seem like bad news can be good, or at least have a positive outcome. Finding out I had cancer was obviously not something I was happy about, or thankful for, but there have been blessings that came out of it, and it hasn't even been that long. Sometimes I just wonder what great things could be down the road for me, that might not have happened if not for the negative things that life has thrown at me. I encourage everyone to be mindful daily of what you are thankful for in your own life, and what good has come out of the bad.

My Story

In June 2011, at 33 years old, I was just about carefree and thought I was invincible. Then the "C" word came into my life. I had a mole biopsied (which EVERYONE said I should get checked out for a long time before I went to the dermatologist), and learned that not only was it melanoma, but it was possibly metastatic, and I would need a PET scan and lymph node biopsy to find out for sure. The scan came back all clear, which was a huge relief, and when I had surgery to remove the melanoma itself, they also biopsied the closest lymph nodes, and those came back all clear as well, another huge relief! A few weeks after the surgery, I was back to normal in the gym and the rest of my activities, and had a cool 5 inch scar on my shoulder that I was kinda proud of.

After a while, aside from visits to the dermatologist every 3 months, I sort of forgot about the whole scare and thought I was past it all, especially since there were no other moles the derm was too worried about. I also figured, they'll catch any new melanoma really fast, and slice it off, and it won't be too big a deal.

WRONG. In June 2012, I was at my one year mark since diagnosis, I was very hopeful that once again, nothing would be found to cause concern at my skin checkup, and I thought they'd tell me I could start coming every 6 months (I think I was wrong about that, regardless, but it's inconsequential). Well, skin was just fine, but as she checked my lymph nodes, as she did at every appointment, the derm felt a mass in the nodes under my left arm. She ordered an x-ray, bloodwork, and PET scan, and said I should make an appointment with an oncologist, and apparently this was all routine anyway, I just didn't know it. (That's a whole other story, for another day)

Even after this, I still wasn't THAT worried (apparently I'm pretty positive, who knew?), and I went and had my testing done, and just knew that I was fine. Yep, wrong again. A few weeks later, I got a call saying that my lymph nodes lit up in the PET scan, and a biopsy would need to be done to see what it was for sure. A week or so later, I got the dreaded news, the melanoma had spread to my lymph nodes, so more surgery would be needed, and most likely immunotherapy (cancer drug treatment) would be needed as well. In August, I had the surgery to remove all the lymph nodes under my left arm, and 5 weeks later, I'm recovering like a champ, if I do say so myself :).  I'll start radiation treatments soon, under the arm where lymph nodes were removed, and I'm hoping to get into a clinical trial for immunotherapy, where I could possibly get a new medicine that should work better than interferon, which is the current standard for melanoma.

So, to sum all this up: I tanned, not excessively, but I tanned. I did not go see the dermatologist like I should have. I got stage 2 melanoma, which is now stage 3b. It's not fun, it's something I have to worry about for the rest. of. my. life. GO GET YOUR SKIN CHECKED PEOPLE! Wear sunscreen, etc, obviously, but go get your skin checked, and while I'm on the subject, get everything else checked too, as appropriate for your age, gender, etc. Early detection is almost always the key. So that's my rant for now, and that's the #1 piece of advice I have to give to others.

I'll keep posting as I feel like it, about what's going on with me and how treatment goes (and any other random thing I feel like, b/c hey, it's MY blog!). It's been very helpful for me to read others' stories, so maybe someone will read mine someday and either save themselves a lot of trouble, or have a better idea of what they're in for, or something. If nothing else, at least it gives me an outlet to ramble as I see fit. Have a good one, don't take anything for granted, and be thankful for every new day. :)