Jillian Hayes

I shared this on Facebook, but also wanted to share here for anyone who might read my blog that isn't on Facebook. This is a news segment featuring a family very dear to my heart, the Hayes Family, who lost their daughter, sister, and wife in December to melanoma. The video is 4 minutes long and is well worth watching.

Daughter's Death Sparks Cancer Campaign

You can visit Jillian's mom's blog here: Jillian's Journey with Melanoma

Jillian's brother's blog here: The Melanoma Ripple Effect

And the Facebook page for Jilly's Jems here: Jilly's Jems on Facebook

I can't say it enough - protect your skin and visit the dermatologist! It could literally save your life. 

Happy Good Friday & Easter!

I have no melanoma news to share, which is great! I just want to say Happy Good Friday and Happy Easter! 

It always seems odd to call this day "Good Friday" when it signifies the day that Jesus died on the cross - but the "Good" part is, He sacrificed himself on the cross to save US, and He rose again 3 days later. I grew up in church and the crucifixion is a story I've heard my entire life, many times, but I still don't entirely comprehend it. The other night I started thinking about how we execute prisoners today, with lethal injection, or maybe the electric chair - is that even still around? And I was thinking how quickly death comes from those 2 methods, and how Jesus was on that cross for hours, in agony, and even though he is God's son, he was in human form, and still felt pain. No matter what I go through in this life, I will never fully understand what he went through - for you and me and everyone else, those who love and believe in him as their savior, for those who don't believe, for those who mock believers, for the murderers, the thieves, everyone. Jesus died on the cross for the worst person you know, and the best person you know. 

So remember, this Easter, it's not about this:

or this:

Side Note: Reese's Eggs are my favorite!!

The true meaning of Easter is this:

We all have this to be thankful for, no matter what else is going on in life!

Sunscreen and Updates

For reasons I hesitate to admit to the melanoma world, I thought I'd talk about sunscreen today. Guess what? You need sunscreen when you're outside, even if you're not at the pool or beach. I should know this, but apparently I need a reminder. I'm really good about putting sunscreen on my face, but not everywhere else, unless I'm in a bathing suit. Well, when you're outside for part of the day wearing a tank top, not only can you get burned, but you can get some really hideous tan lines. According to my dermatologist, if you're fair skinned like me, you need an SPF 50. For those less subject to burning, an SPF 30 is okay. You also need to put a ton of it on, you're not just applying a light layer, because the SPF is even lower if you don't put enough on. An ounce, or a shot glass full, is about what you need for your entire body. Then you need to reapply every 2 hours, more often if you're swimming or sweating. When I'm going to the pool, I usually apply my first layer of sunscreen before I put on my bathing suit to avoid those weird burn areas right along the bathing suit line, where you didn't get close enough. So anyway, the moral of the story is, wear sunscreen when you're going to be outside, whether you're at the beach, doing yard work, or running in the River Run and hanging around outside grilling and having some beverages!

Melanoma Update: I had some routine blood work done last Friday, and my blood is apparently pretty awesome! I saw G, the Nurse Practitioner, instead of Dr. J, and she went on and on about how great all my blood work was. I've only seen her twice and she is just so sweet and amazing. She was very encouraging about everything, I just can't get over how nice she is. I'm sure in the oncology department, they don't get a lot of great news, or have a lot of healthy patients, so I'm extremely happy to be that star patient! I'll go for scans and another ipi treatment next month, and I really don't want to think about it yet because I don't want to get the "scanxiety". 

I'm having some issues with range of motion, and a little bit of lymph-edema is setting in, so I'll go see a specialist about that in a few weeks. This is from my surgery last August to remove the lymph nodes, and subsequent radiation therapy. Removing the lymph nodes can mess with the lymph fluid, and cause that limb to swell. Right now, it's not bad, but it needs to be controlled before it gets out of hand. 

I also saw my dermatologist yesterday for my 3 month checkup, and there was nothing questionable there, so no news = good news!

So all in all, things have been pretty good. I ran the River Run 15K last weekend and had a great time (except for not putting sunscreen on my arms!). I hadn't been running because of a knee injury, but I ran the whole 9.3 miles without stopping, and it was slow, but I'm okay with that! The girls always wear tutus and we always have shirts made for races, and this one was dedicated to our friend Allen, who has throat cancer and is currently in treatment and could not run with us. The back of our shirts said "Getta Bike" because that's what he had been saying for a while, even before cancer stopped him from running. He came to our carb up dinner and our post run party, and he's doing so great, but definitely send some prayers his way. He's undergoing chemo and will start radiation soon, but he has a very positive attitude and we know he will be just fine! 

Here are some pics of the race:

At the starting line 

Getta Bike!! 

Well, Hello Beaker..... (One of my favorite things

about the River Run is the costumes!) 

The girls before the race - it was COLD, but 

once we started running, it was perfect weather!

Remember, the word of the day is: SUNSCREEN. Wear it. All the time. The least of your worries is ugly tan lines, and an uncomfortable sunburn. The worst is the irreversible damage you are doing to your skin. Never let yourself get burned, and for those of you with kids, keep them covered with sunscreen! Make them come out of the water, dry off, and re-apply. I remember hating that when I was a kid, but even before we knew what skin cancer was, my mom was sure not to let us get burned.   

Tanning

Since being diagnosed with melanoma, and especially since it progressed last summer, I read a lot about tanning, not because I seek it out, but because it's so central to the whole melanoma deal. I believe in moderation when it comes to a lot of things, and I'm pretty moderate in my opinion of tanning. I don't think it's the worst thing you can do, and I definitely don't think it's the best thing you can do. One of the reasons I didn't go get my mole checked out sooner was because I thought they were going to lecture me about tanning and doom me to a life in the darkness. My mom had a stage I melanoma and her dermatologist basically advised her to become a vampire - in my opinion anyway. Actually the first dermatologist I went to never really lectured me about tanning at all, she did her spiel about wearing sunscreen and avoiding the sun at the peak times (10am - 4pm), but that was about it. My Mayo Clinic derm also never lectures and has even less of a spiel about sunscreen - not because it doesn't matter, but because I pretty much know the spiel now. 

I know a lot of people don't want to listen to any melanoma awareness talk because they don't want to change their tanning habits, like me. Because I know this and understand it, I encourage you to take small steps in changing your habits. If you have a habit of letting yourself get burned in the summer, please be more careful this year! Wear more sunscreen than you think you need, and re-apply it more often than you think you need to. If you tan in the tanning bed, I'd like to say quit, but I know not everyone will, so at least cut back and supplement with self tanning lotion - that's what I did pre-melanoma and it helps boost the tan a lot (I feel like I'm doing something very wrong by offering any tanning tips, but I'm just working with the knowledge that not everyone will just quit tanning!). But understand this - tanning your skin is damage. It just is. We all have seen the stereotypical old lady who's tanned too much and has leathery skin, like this: 

I think we can all agree that it's not the most attractive thing ever, and if you continue to tan, you will look like some version of this when you're old! You'll have more wrinkles, and your skin will not look nice. So while you feel like you have a "healthy glow", you're really just damaging your skin, and your future self will regret it, skin cancer or not.

And if you're really worried about the way you look, scars from having skin cancer removed don't look pretty. It's not just melanoma, basal and squamous skin cancers also require a chunk o' skin to be removed. I've been fortunate to have my melanomas on my back/shoulder, where there's some extra skin, but if there's not enough extra skin where yours is, they could have to graft skin from somewhere else, and it's just not fun. Don't even get me started on the fear that skin cancer will show up on my face, and even though I have ALWAYS, even as a teenager, been very careful not to let my face get ANY sun, it could still happen. Plastic surgeons can do great things but who wants to go through that?! If you need a dose of the reality of living with advanced stage melanoma, go read the message boards at Melanoma Research Foundation and you will see personal accounts of what these people go through. Not what the doctors say, although that's elsewhere on the website, but real people, young, old, rich, poor, from all over the world, who have had their lives turned upside down by melanoma. Traveling to appointments, worrying about what insurance will or won't cover, having multiple surgeries and treatments, and sometimes planning for the loss of their lives or the lives of loved ones. If all you know about melanoma is me and what I've been through, you don't know a fraction of this world. I am thankful every day that so far, my situation has been pretty easy, at least compared to so many others'. 

The flip side of the tanning controversy are the claims of how good the sun is for you, the vitamin D exposure, etc. First of all, I laugh whenever I see the whole vitamin D thing used as a reason to tan in the tanning bed, not because it's actually funny, but because how many of these vitamin D proponents eat a healthy diet full of fruits and vegetables needed to get other important vitamins and minerals? Now, if someone does eat a healthy diet, and tries to get a little sunshine on a regular basis, I think that's great. But don't push tanning as something that's healthy for you, especially in a tanning bed. Getting a small amount of sunshine is a different story than baking yourself in the sun or tanning bed. If you're out enough to get "tan", you're probably overdoing it. It makes me a little sick to read articles that make it sound like tanning is good for you, and it's not like I'm totally anti-sun, I just think it's irresponsible to pretend that it's healthy to get inside a tanning bed for 20 minutes a few times a week. For 99% of tanners, I would be willing to bet that it's about the way they look and has nothing to do with vitamin D. 

So, the takeaway from this is, try to be moderate and work on changing some of your habits. Just like I tell personal training clients, or anyone who asks my advice on weight loss, making small changes to your existing habits is the key. I'd love to get all of you to quit the tanning bed, wear sunscreen on a daily basis, and really load up on sunscreen when you're out in the sun, but I can see you now, putting your fingers in your ears, saying "lalalalalala I can't hear you" at the first sign of a skin cancer lecture. So for yourself and those who love you, please just be more careful! 

Happy Valentine's Day!

Just a quick post to say Happy Valentine's Day to everyone! Whether in a relationship or not, I've always felt like V-Day is a little silly and pointless, but I do have a lot of great people in my life who I love very dearly, from family to friends and family who are like friends and friends who are like family. I'm a really lucky girl to have so many people love me, and to have so many people to love! So whether you have a hot date for Valentine's Day, or a hot date with your couch and the TV, be thankful for the ones you love! And chocolate, be thankful for chocolate. 

How cute is this?! Found it here: Brick Artist

Don't Do That!

I was watching TV last night and an awareness commercial for something came on, I can't remember what it was for, but it made me think about how we usually champion for a cause that has affected us in some way. No one really cares about texting and driving until someone they know has been in a car accident while reading or answering a text (well that's half true because my mom gets on to me about texting and driving all the time!). No one cares about cancer until they have been personally affected by it. The list could go on and on. I never thought much about melanoma until I had to go get a PET scan to see if it had spread to my internal organs, even though my mom had it and had a "shark bite" scar on her arm. Hers wasn't deep enough to warrant any further lymph node biopsies or PET scans, so even after she had it, it was still "just skin cancer" to me. 

So as I saw this commercial last night for whatever it was, I was thinking about how we're constantly being told what to do or not to do. In the melanoma world, it's don't tan, wear your sunscreen, etc. In other worlds, it's don't text and drive, don't drink and drive, don't smoke, etc. The anti-smoking commercials are probably the best example. They show people whose lives have been drastically altered due to smoking, whether they have to use a voice box thing to speak (I probably could've googled the name of that thing but I'm lazy and you know what I'm talking about!), or have had body parts amputated, or use an oxygen tank to breathe. I wonder how many smokers are actually affected by these ads? If you're a smoker and reading this, let me know in the comments! Melanoma obviously isn't as widely talked about, but I've seen some pictures that should make anyone put on sunscreen and visit their dermatologist, but I wonder if I'd seen those pictures pre-mel, would it have changed my behavior? I guess what I'm getting at is, I wonder if these awareness ads actually make a difference? Are they ignored by many, and maybe taken seriously by a few? Or are we all desensitized to anything we hear or see on TV?

I know that no one ever comments on my posts, but I'm really curious what other people think about this, and what you think does get through to others, so if you have an opinion, please share!

A Caregivers Point of View on Cancer

Today's post is from a guest blogger, who contacted me through this blog and wanted to share the story of his wife's diagnosis with mesothelioma (wow, I spelled that correctly on my first try!). Obviously I focus on melanoma, and from the side of the patient, but I think it's a great idea to learn about other illnesses and other points of view.

So, I'd like to introduce you to Cameron!

A Husband's Reflections on His Wife's Cancer Diagnosis

November 21, 2005 is a day never to be forgotten in my family. It’s the day my wife was diagnosed with cancer, malignant pleural mesothelioma, and I became her caregiver.  The timing of her diagnosis could not have been more devastating. Just three months before Heather’s mesothelioma diagnosis, we celebrated the birth of our first and only child, our daughter Lily. We had been eagerly anticipating her first Christmas and the memories we would make as a new family.  However, the diagnosis changed all those plans in an instant.

The implications of caring for someone diagnosed with cancer became apparent while we were still in the physician's office. We were told that we needed to go elsewhere for treatment, with three options that included the local university hospital, a regional hospital without a Mesothelioma program, or a Mesothelioma specialist in Boston named Dr. David Sugarbaker. My wife was silent in disbelief. I knew that she was shocked and needed help, so I told the doctor that we would see the specialist in Boston.  This would be the first of many difficult decisions we would be asked to make over the coming months.

Our daily routines disappeared after that. Heather had to quit working and I had to scale back to part-time in order to care for Heather and Lily. Traveling to appointments and caring for Lily caused me to feel overwhelmed. I feared my wife would die and my child and I would be bankrupt and alone.  These thoughts filled me with fear and dread, and more than once I cried and wished it would all disappear. However, I never let Heather see me in these moments of weakness.  I always did my best to remain strong in front of her.

Family, friends and complete strangers helped us with everything from comforting words to money, reminding us we were not alone. We are thankful to each and every person who reached out to us in our time of need. One thing I learned, and the strongest piece of advice I can offer to others in a fight with cancer, is that if someone offers help, accept it.  There is no room for pride or stubbornness when a loved one’s life is on the line.  Even the smallest bit of help can be a weight off your shoulders, and will remind you that you are not alone in the fight.

Caring for someone with cancer is difficult. Stress, uncertainty and chaos test you daily. Strong emotions such as fear and anger surface. You will have bad days, this is inevitable and you have to accept that, but you can never give up hope.  Always hold on to hope, and use every resource at hand to get yourself through. Heather went through surgery, radiation and chemotherapy fighting mesothelioma, and against all odds, she managed to beat it. Seven years later she is still cancer-free.

I used my stubbornness to my advantage and learned that time is precious. Two years after Heather's diagnosis, while working fulltime and caring for her and 2-year-old Lily, I returned to school fulltime to study Information Technology. I graduated at the top of my class and much to my honor, was the speaker of my class. I remember my graduation speech well.  I told my fellow graduates to never give up hope and realize that within each of us is someone capable of accomplishing anything, as long as we believe in ourselves.  Heather and Lily were in the audience to cheer me on, and that was the greatest reward of all.

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Thanks to Cameron for sharing his family's story! You can "like" Heather's page on Facebook here: https://www.facebook.com/HeatherVonStJames?fref=ts and visit the mesothelioma blog that Cameron and Heather contribute to here: http://www.mesothelioma.com/blog/authors/cameron/