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/

Happy Birthday To Me!!!

So yesterday was my birthday, and I happened to have follow up scans scheduled that day. Blood work at 7am (boo!) and a PET/CT Scan at 9, with an appointment at 2:30 to get results. I love that Mayo gives results the same day! The first 2 scans I had were at a different hospital and it took a couple weeks to get results. Especially the 2nd time, when no one seemed to know what was going on or who ordered the test to begin with, but that's a long story for another day. Anyway, ever since they scheduled the scans I've been a little anxious, which I guess is pretty common since the term "scanxiety" has been coined for this very thing. The day went by pretty fast, the break in between blood work and the scan was the worst, because I couldn't eat. But once the scan was over, I ran some errands, visited my mom at work for a little bit, then we went to lunch, where I took advantage of a great wine tasting special they had, then I wasn't so anxious for the appointment to get results! We got back to Mayo right on time, got called back almost immediately, and the doctor came in within 5 minutes of being in the room. Dr J, my oncologist, is probably the most caring doctor I've ever been to. Within seconds of walking into the room, he says those words we all want to hear after a scan, "Everything's fine"! The last time I had scans, it was on a Friday and my appointment wasn't until the following Monday, and he called me on Friday afternoon to let me know all was well. I really appreciate that kind of stuff. Also, after I left yesterday, he called me to say Happy Birthday and he was sorry he didn't notice while he was in the room. Little things like that mean a lot, and while his competence as a doctor is the most important, the fact that he seems to care about his patients as people means a lot! All in all, great birthday! I had tons of sweet messages, phone calls, texts, flowers, cupcakes, drinks, etc. 

I saw something on Facebook about 50 Bible verses everyone should know, so a couple weeks ago I decided to memorize one a week for the rest of the year, and I wanted to share this week's verses (the 2nd part isn't on the list, but I love it):

Isaiah 40:28 - Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. 

I really love that last part and it means a lot to me, especially this week. People say that I'm strong and a lot of other nice things, but I know that I'm only strong because God gives me strength, where I am weak, He is strong and He gives me the grace to get through tough situations. For the past few weeks, I've had "scanxiety" and wondered if something was going to show up this time, knowing that if it does, that puts me in the stage IV category, but I also know that whatever happens, God will give me strength to get through. Whatever you are going through today, God will give you strength as well, you just have to ask for it and know that He will provide just what you need. It doesn't mean that life will be easy, or that you will always be happy about your circumstances, but He can make beautiful things out of the ugliness. I've met some wonderful people because I have melanoma, and I've had the opportunity to share with others through this blog and Facebook, and I've been so blessed in so many ways. 

Well, I'm gonna stop here before this short update becomes a long winded ramble! Later y'all!

Love Your Skin Link Up

I'm doing my first blogger "Link Up"! Yay! The lovely Katie of Pretty in Pale put this together with Erin of Shades of Gray and a Pinch of Pink (until today I had not read Erin's blog, but she's pretty hilarious! - and check her blog post on this subject, if for no other reason than to see the sun damage done to one half of a truck driver's face! Crazy!)

So, here we go with the questions!

1. What's your daily skincare routine?

I'm not sure I'd call it a "routine", but usually I wash my face at night in the shower (currently using Neutrogena Naturals), and then moisturize with Neutrogena Night Cream or sometimes just coconut oil. In the morning, I rinse off my face but don't wash it because it seems to dry it out too much, and moisturize with either Jergens gradual self tanner for the face, or Neutrogena daytime lotion, both of them with SPF of course! I try to exfoliate on a fairly regular basis, and I have a few different things that I use, some of them from samples that I get.  

2. A skin product you could never live without?

Hmmmmm, definitely need moisturizer, definitely need sunscreen, speaking strictly skin care and not makeup, I guess that's what I can't live without. If we're talking about makeup as well, under eye concealer and eyeliner!

3. Have you ever used a tanning bed?

Oh yes, of course I have! I started when I was pretty young, probably 16-17, and tanned off and on for years until I was diagnosed with melanoma at 33. I was never a "tanorexic" and always tried to be moderate, but as a lot of us have learned, there's really no such thing as a safe/moderate tan. I will not pretend that I don't miss having a streak free tan, or the nap time I had in the tanning bed, but I now compare tanning beds with smoking, it might make you feel better temporarily, but the consequences are most definitely not worth it! And it's not just the risk of skin cancer, it's also the sun damage that can make you look old beyond your years. 

4. Thoughts on spray tanning?

Spray tanning is ok, I have done it a few times for special occasions, even before melanoma entered my life. It's not perfect, at best, you'll have some streaking and it looks a little weird wearing off, and at worst, you'll look like an oompa loompa! I don't spray tan much, but I do use self tanner on a regular basis. It's important to love your skin (and body!) the way it is, but I also have pale skin and dark body hair, along with keratosis pilaris (red bumps on my arms and legs), so I need a little help! 

5. Favorite brand of sunscreen?

For my face, I use Neutrogena sunscreen with a ridiculously high SPF if I'm going to be outside. For the rest of my body, I'll use whatever I find as long as it's not expired - and I will throw it away if it's expired, even though it's probably still good and I'm just wasting my money, but better safe than sorry! 

6. Biggest skincare splurge?

I guess my biggest splurge is Bare Minerals makeup, and Urban Decay Primer, and even though they're makeup products, I feel like Bare Minerals is good for my skin so I'm counting it! I'd love to splurge on Arbonne because I love their products, but I also like to be able to just walk into a store and buy what I need, and Arbonne isn't sold in stores.

7. Celebrity with the most perfect skin?

That would probably have to be Nicole Kidman, her skin is gorgeous!

8. Feature you're most self-conscious about?

Geez, how much time do we have here? I suppose the aforementioned dark hair and keratosis pilaris makes me the most self conscious. 

9. What do you think about botox?

There are times that I look at my forehead and eye wrinkles and think it would be awesome to get botox, but for the most part, I would not want poison injected into my face. Plus, my eye wrinkles are mostly from smiling and laughing a lot during my almost 35 years on this earth (34 years and 51 weeks exactly, but who's counting?!). Just like most things, I think it's fine in moderation, but it can be overdone and then you just look weird and expressionless.

10. I feel most confident when...

When I'm gross and sweaty from a great workout! Or when I'm dressed up to go out - I work in a small office and don't really dress up much for work, and then I'm at the gym most days after work, so I spend a lot of time in jeans, shorts, t-shirts, tank tops, flip flops, tennis shoes, etc, so I love getting dressed up sometimes!

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So, that was fun! Be sure to check out Katie & Erin's blogs, and on their posts they have links to the others who are participating so you can see what all they have to say about their skin. You might get ideas about awesome products to use, or learn from someone else's prospective about skin care and health. If you're a blogger, you should definitely participate! 

Happy (Late) New Year!

So, I'm not a very good blogger as far as posting on a regular basis and keeping people updated on what's going on with me (even though probably anyone who actually reads this and cares already knows!). I'm going to TRY and post a little more regularly, whether melanoma related or not. I'm a part time personal trainer so I've thought about including some general health and fitness related posts. Anyone who knows me knows that I can definitely ramble on about that subject forever!

The first thing I'd like to update is my last excisions. Remember the scar that looked pretty bad for a stage 0 melanoma? This is what it looked like 2 weeks after the excision: 

Not bad at all! I know the picture is terrible, but it's really hard to take a picture from that angle! The scar is barely even visible, what looked so bad in the first picture was the glue, once that came off, it looked so much better. You can see where the band-aid was irritating my skin though. The 2nd excision was on my leg, and it's healing very well, but this is where I will offer advice to anyone having an excision done - do NOT opt for a shave removal as opposed to a punch removal! If you are having the initial biopsy done, NEVER opt for a shave, as that could keep them from properly staging it if it is melanoma. In this case, they'd gotten it all, and it was just a question as to how to get clear margins. They thought a shave might be better so that I didn't have to worry about stitches, but the shave (basically they just scooped out some skin and left it open to heal) has been a pain! I keep it covered in Vaseline and band-aids, but the band-aid again is irritating my skin, and it's just gross and is taking forever to heal! Good news is, both of them came back with no melanoma/atypical cells, so they got everything with the initial biopsy. I guess the bad part is that I was cut on for no reason, but a few weeks of annoyance is better than not knowing!

As far as the drug trial, I have now had my 4th treatment, and still zero side effects! I ran/walked a 1/2 marathon 2 days after my 3rd treatment. After the 4th treatment (about a week and a half ago), there have been times I was wondering if side effects were kicking in, but I don't think so, aside from maybe some fatigue - it's hard to say if that is because of the Ipi, or just because I've been pushing myself in the gym a little more and taught 3 spin classes last week on top of everything else! 

I also started the "Lean Body Challenge" last week, although I could probably just call it the "Eat Clean and Workout Challenge" because that's my real focus. I've got some gym friends and Facebook friends participating with me, and I also joined a DietBet and have $50 to lose if I don't lose 4% of my body weight in 4 weeks. If you need motivation to eat right and work out, check out their website! Btw, losing 1% of your body weight per week is very safe and reasonable weight loss. What's bad is that my health alone wasn't enough to keep me motivated, because it really should be, for all of us. Whether I had melanoma or not, my health should be one of the most important things to me, but I have a hard time putting the effort into it sometimes. You have to shop for groceries, you have to get all this food ready to eat, whether cooking or prepping, you have to have the willpower to actually eat this healthy fresh food when you're tempted to go out to eat instead, you have to make time to exercise and many times, force yourself to finish when you don't feel like it. Isn't it so much easier to sit on the couch, and order a pizza?! But, we truly "are what we eat", and I sincerely feel so much better when I am eating healthy lean protein, whole, unprocessed carbs, and plenty of fruits and vegetables. I've never once left the gym thinking, "I wish I'd went home and watched TV instead", I'm always glad I exercised, even when I have to get up early on a Saturday to go running, even when it wasn't my best work out or when I've struggled through an entire run. I did the "Lean Body Challenge" 2 years ago, and my goal was to win the challenge - which included winning a cruise! This time, I just needed something external to motivate me and I'm not "officially" entering the challenge, but my goals are to use the 12 weeks to learn how to live a healthy life style, once and for all, not for a 12 week period, but forever. I'm not saying I will never eat fries and pizza (because I haven't lost my mind!!), but the junk food (and a lot of it really is just junk, if it doesn't do something GOOD for your body, it's doing something BAD) should be an exception, maybe a treat, not part of a regular diet. I had it flipped around for a while, where the junk was the rule, and the healthy food was the exception. Bottom line, whether you are skinny or fat, young or old, healthy or sick, what you put in your body is important! Being skinny and appearing healthy doesn't get you off the hook - think of a car that looks awesome on the outside, shiny paint, nice wheels, clean interior, etc, but under the hood, the engine is rusted, has low quality fuel, no oil or fluids, hoses falling off everywhere; how far is that car going to take you? Is it worth it to have a car that looks nice but can't make it to the end of your street? The flip side of that is a car that looks beaten up on the outside, maybe some dents, some paint missing, little body rust, but the engine has been maintained, fluids are topped off, high quality fuel is being used, and you could drive it across the country and back. That's a Melissa original analogy, and you're welcome :)

I wonder if I posted more often, if my posts would be shorter? Yeah.....I doubt it too.....

Anyway, til next time, I'm going to steal a line from one of my favorite movies ever, Take Care of You!

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!! :)