Don't Fry Day

Hi everyone! Hope you are all as excited as I am for the upcoming Memorial Day weekend!  I'm still feeling great and healthy, which is still so new and refreshing for me that I definitely won't take it for granted.  Even got in some exercise last night with mom, and I'm sure I'll be cursing Jillian when I can't walk today -- this whole getting back in shape thing is exhausting after being pretty inactive for the last month and a half.  But I'm glad to be able to start living life again! I was able to dive right back in to my projects at work, and tonight I finally get to catch up and see some great friends while celebrating two birthdays. Life is good.

Now as you might remember, one of my goals of this blog was not only to share my progress fighting melanoma, but to also spread awareness about the prevention of skin cancer.  Here are some helpful links and info about "Don't Fry Day" which happens to be today!

The National Council Declares the Friday before Memorial Day, May 24, 2013 is “Don’t Fry Day” To Encourage Sun Safety Awareness.

With Memorial Day weekend kicking off, I know many people, including myself, will be spending time outside enjoying the spring weather (or summer weather for those of us in FL). It's important to remember to protect your skin while you are out, so please remember to apply and reapply sunscreen, wear sunglasses and hats, and seek shade whenever possible during those prime sun hours.

This scary fact caught my eye from the website I have linked above -- "Skin cancer is on the rise in the United States, and the American Cancer Society estimates that one American dies every hour from skin cancer."

It is easy to ignore and disregard all the precautions we can take from the sun, when it is such an enjoyable part of life.  Take it from me, I absolutely love the beach, boating, and spending time out in the Florida sun.  But, unlike before my diagnosis, I now want to spend my time in the sun safely!

It takes a little effort, sure. But now that my life has been threatened by damage from the sun, I am more than willing to put in the extra effort to prevent any further damage. And I hope you are too!  I've started by taking some simple steps, like applying a moisturizer with SPF every day.  Whether just going to work, the mall, wherever - it provides a layer of protection for your skin that may not be covered by clothing.  I've become a huge fan of floppy hats too -- I don't think I'll be caught at the beach or on the boat with out one! I also like to keep a travel size sunscreen in my purse, just in case I might end up being outside longer than planned.  Little adjustments now might just save your skin, and possibly your life.

Here are some more facts and prevention tips from the American Cancer Society:

Source: http://www.cancer.org/research/infographicgallery/skin-cancer-prevention
 

I hope everyone has a great Memorial Weekend! Stay happy, healthy, and practice sun safety!

Waiting Game

Just got back from my appointment today, and overall it was good news. The first thing clarified was that I will not be having the fourth Yervoy infusion (the final of the series). We have been informed that the Yervoy infusions have delayed effects, and even without having the fourth infusion, the drug has been known to shrink tumors weeks and months afterwards.

So, I will be waiting it out, and I am scheduled to have my next set of CT scans done in four weeks. Although I'm not overly thrilled about the wait, I am happy that I'm back to being healthy enough to live a normal life.  And yes, that means I finally will return to work!

Tomorrow will be my first day back at work since the very beginning of April.  I'm excited to get back, as sitting around the house all day gets old pretty fast!  And hey, when I regret ever saying I'm ready to work again, at least there is a three day weekend coming up to make up for it! :)

That's pretty much all the updates for now.  Once I go back in for my next scans, the doctor will determine based on tumor shrinkage or non-shrinkage whether we continue to wait longer for more Yervoy delayed effects or start on a different treatment plan.  I intend to make the most out of having my energy and health back, and will wait patiently until I find out more!

Everything Happens for a Reason

First, I'd like to thank everyone for the overwhelming love and support I received after sharing my first post last night. I can't even express how much it means to me to have all of you behind me during this hard time. That being said, I'll get into today's post.

 

Lately I can't help but think about how blessed I've been. When I look back specifically to the beginning of my journey when I was first diagnosed, I don't know what I would have done without having my parents by my side.  How crazy it is to think that just a year prior to my diagnosis my parents lived seven hours away!

I had moved to down to the Tampa area immediately after graduating high school and started at USF in 2006. I fell in love with the city and haven't left since. My parent's move down was prompted by my father taking over a position in his company that was based in Tampa, and I was happy that they would be living closer to me for the first time in quite a while. I had no idea what would be coming into my life just one year later, but now that I look back it is clear indication to me that the move happened for a reason.

In case you haven't caught on yet, I'm pretty much obsessed with Tampa. I think it's a beautiful city with so much to do! The close proximity to the water, the warm weather, the greatest university ever (USF!), and my friends are just a few of the reason I love it here! But, the one part of Tampa that I took for granted before last October was Moffitt Cancer Center. Living so close to one of the best cancer treatment centers has been such a blessing. At every appointment I have, I always hear patients talking about how far they had to travel to be treated at Moffitt. How lucky am I that I'm just a 30 minute drive away?

Tampa has also been good to me job wise. I was lucky enough to get a job right after college graduation. And after working two years and gaining some job experience I was able to change jobs to a position I really enjoy.  The flexibility and support from my coworkers and entire team has been amazing. I'm blessed with having great insurance that has helped me be able to afford and receive these advanced treatments. 

If having cancer has taught me nothing else, it has taught me to have faith and to believe that everything does happened for a reason. Whether we understand the reason now, or it will be revealed to us later -- that part is out of our hands.

Looking forward to tomorrow for my long awaited appointment at Moffitt to find out what's next for my treatment plan. Of course, I found out today that my oncologist is out of town due to an emergency so I'll be seeing a different doctor -- got to keep it interesting. I'll update everyone tomorrow with whatever I find out.

 

From the Beginning Until Now...

May: Melanoma Awareness Month

 

I couldn't think of a better time to start my blog about my journey battling this awful cancer.  I have been meaning to start this so long ago, but finally with the media talking about raising awareness and my treatments kicking my butt, I am getting my act together!

I've kept pretty quiet so far during my fight since I was able to live a pretty normal life up until the beginning of April.  Other than my close friends and family, many do not know that I have been going through treatments since being diagnosed with Stage 3 Melanoma in October 2012.

How It All Started

Unfortunately, my story doesn't begin with finding an odd mole.  Instead, I was past that point and just didn't know it at first.  I originally felt a large lump under my left armpit. Of course, I jumped right on to the "know-it-all" internet and googled what the possible causes might be.  Most suggestions were: ingrown hair, infection, or something not to be too concerned about.  I let it go for quite some time until it finally started to get larger and painful.  I stopped into the Immediate Care Clinic and they weren't too concerned either.  They prescribed me some antibiotics to take for a week and sent me on my way.  I was relieved, but I had no idea the havoc this little lump was going to cause me in the future.

After taking the antibiotics, the lump got a little smaller.  But I knew it was still there and that it probably shouldn't be.  So, I set off to see my primary care physician for an annual check up and planned on bringing it up to see if they were concerned about this lump.

My primary doctor said that the lump was an enlarged lymph node and that it could just be irritated by some kind of infection.  So they once again suggested to try another round of antibiotics.  This time around the antibiotics didn't do much of anything and I knew it was getting worse.  When I went in after a week they suggested I go an get an ultrasound done of my underarm and breast to help them figure out what was happening.

Next thing I know, the ultrasound came back and my primary doctor suggested I see a breast specialist since they detected multiple enlarged lymph nodes.  I was getting concerned that I was having to go to yet another doctor and that nobody seemed to know what was wrong with me.

My mom joined me as I went to see the breast specialist.  Walking into that building there were lots of breast cancer patients in the waiting room and things were getting a little scary.  I met the doctor, and she was the kindest, friendliest doctor I had ever met which made the situation slightly better.  She told me that nothing was in my breast (what a relief), but they would need to either do a needle biopsy or surgery to know why the lymph nodes were staying so enlarged.

I opted for the surgery, since the needle biopsy wasn't always known to give the true story of what was wrong.  There was no way I wanted to end up having to do both! My surgery was planned as soon as possible and I would finally know what was going on with my body! I was definitely scared, but mostly I was just anxious to get rid of the painful Ping-Pong sized lump under my arm.

Surgery #1

 

 

I had my surgery on October 8th, 2012 at St. Joseph's Hospital in Tampa, FL.  I had an excision of my left axilla, which is basically a fancy was of saying they cut open my left armpit and removed the enlarged lymph nodes.  The surgery went well, although the outcome wasn't too good.  The doctor came out and told my family after the surgery that they could tell the enlarged lymph nodes did not look healthy and that they could not remove all of them during the operation.  At this point, we still did not know what caused them and would have to wait for the pathology report.  I only had to stay one night in the hospital after the surgery and then was able to recover at home for the rest of the week.

I had to have a Jackson-Pratt drain put in my underarm to catch all the fluid, and let me just say it is nothing you would ever want to experience. 
Here's what an idea of what I went through. ( I didn't even think to take pictures when I went through all this :/ )

Five long days after the surgery, we were off to go see my doctor to finally find out the results and get my awful drain removed!  The doctor first checked on my incision and removed the drain, then she asked both my mom and me to sit down with her.  She told us that the labs came back and they tested positive for Melanoma - the most deadly form of skin cancer.  I couldn't really comprehend what she was saying since I was in a state of pure shock and disbelief at what I was hearing.  She then said to me, "This is just part of your story, not your whole story." I'll never forget those words because they gave me hope that this wasn't going to be the end.

Meeting Melanoma

 

After my appointment with the breast specialist, I was set up to go to Moffitt Cancer Center in Tampa, FL to meet my oncologist and find out what was next.  I had to wait a week to get my first appointment, and the anticipation was the absolute worst.  How bad was Melanoma? I had no idea that Melanoma would be spread into my lymph nodes before I was able to catch it on my skin.  I thought Melanoma was just skin cancer and if I ever would get it that they would just scrap the bad mole off of me and that would be that. I was very wrong.

I met my oncologist, Dr. D (for future blog reference) and started to find out my options.  I was told that they were going to need to do some CT and MRI scans to find out if the cancer had spread anywhere else in my body. Such a terrifying thought.  Once the scans were done they would know if they could perform a second surgery to remove the rest of the cancerous tumors, or if a different route would be taken.

Meeting Zelboraf

 

The scans came back, and there were both positives and negatives.  The best news was there was no evidence the cancer had spread anywhere other than around the left under arm. Such a relief.  Bad news was no surgery would be performed as the tumors were deemed unresectable.  The new plan was to find out if I had the BRAF mutation.  This would be done by running another test on the lymph nodes they removed during my surgery.

 

It took almost three weeks for the results from the test to come back.  But finally I found out I tested positive for the BRAF mutation, and this was great news because I was now a candidate to be able to take a new medicine, Zelboraf, that targets the specific BRAF gene I had associated with my Melanoma.  This treatment consisted of taking 8 pills a day, 4 in the morning and 4 at night.  Learning that all I would have to do was take some pills and wait to see if they started to shrink the tumors sounded like a great plan to me. No needles, no going to the hospital for infusions.. sounded great. 

 

Fast forward about three weeks, and here come the side effects.  The day after Thanksgiving I broke out into a severe rash in a matter of 5-6 hours and had to go to Moffitt's version of the emergency room as swelling also began.  They had to use massive amounts of Benadryl and put me on steroids to get the swelling to go down, and stop the rash from getting any worse.  Needless to say, I was taken off the medication until my skin recovered.

 

After a few days, things started to get a little better.  When I went to see Dr. D his new plan was to resume Zelboraf at a lowered dosage and slowly work my way back up to full dosage.  I was not excited to possibly have the reaction occur again, but I didn't really have a choice.

 

The slow re-introduction of Zelboraf went much better, no bad reactions for at least a month.  Felt like everything was actual going right.  I was able to go back to work and resume normal social activities with friends and family. But with Melanoma nothing is easy.

 

I had felt a lump near my collar bone not far from my left under arm where it all began.  I knew nothing good could come of this.  When I met with my oncologist, he was concerned as well.  Clearly there should not be a lymph node getting larger when I'm taking this medication to shrink them, right?!

 

Meeting Yervoy (Ipi)

The decision was made to keep me on Zelboraf, as well as start Yervoy infusions.  Yervoy is another new drug to treat advanced stages of Melanoma in a series of four infusions, one every three weeks.  I was not happy about still having to take the Zelboraf pills, but if the doctor thought it may still be effective I guess it was worth a shot. 

 

Going in for the first infusion was quite the experience.  The wait time just to get back to the chemo suite was over 2 hours past the original appointment time.  Let's just add that once you get back to the chemo suite and hooked up to your IV, the infusion takes 90 minutes!  Talk about a long day.

 

A few weeks after the first infusion, I broke out in another rash. Yes, again.  Off to Moffitt I went to get hooked up with a large dose of Benadryl.  When I went to follow up with Dr. D, he decided to finally give the Zelboraf a break for good until further notice.  I couldn't have been happier to give my skin a vacation from those awful side effects!

 

Everything went well for a while after the rash went away.  I got through the second and third infusion with minimal side effects, just a bit of initial exhaustion and fatigue directly after each infusion. Things were looking up again.  Should have known I was in for something when things were going so smoothly.

 

A couple days after I had my third infusion, I woke up in the middle of the night with uncontrollable shaking and a fever of over 103 degrees.  The fever would break and come back again like clockwork.  It had to be the most miserable experience ever.  My mom called into Moffitt and they recommended Tylenol or Motrin to try to control the fevers, but it just wasn't doing the trick.  Eventually after days of having this rollercoaster of fevers, I went into Moffitt and had blood work done.  One of the rare side effects of Yervoy is drug-induced hepatitis.  And yes, I'm one of the lucky one who got to experience this.

 

They were able to treat the hepatitis by putting me on steroids.  Thankfully they started to work quickly, and the fevers finally stopped.  But of course these steroids caused other issues.  I started to feel really dizzy all the time, and I had issues concentrating or focusing on anything.  When these symptoms wouldn't go away, Dr. D scheduled me for an MRI to check that nothing was going on in my brain.

 

The MRI came back clean! One less thing to worry about, but they still didn't know what was going on with me.  More blood work was done, and they realized my hydrocortisone were way too low after being on the steroids and they needed to get me on medicine that would replace this in my system.  Since I couldn't take the hydrocortisone until I was weaned off the steroids, it took about a week before I could even start this new medicine. Let the dizziness continue :(

 

In the meantime my body decided it would cause some more trouble.  My bottom lip started to swell.  At first we weren't too concerned, but after a couple days it was enormous.  What in the world was going on now?

 

This appointment was intense.  I think I saw five doctors in the same day in the same room to evaluate what to do about my lip.  They were afraid there may be cancerous tumors that spread into my lip and they were going to need to perform a surgery to figure it out.  Two days later I was scheduled to have my bottom lip cut open to have either cancerous tumors removed or to clear out a really bad infection.

 

Surgery #2

 

The surgery went really well.  The plastic surgeon had to make an incision down the center of my bottom lip.  Luckily, they did not find any tumors and it ended up being a really bad MRSA staff infection that needed a course of antibiotics to clear up.  I could not have been more relieved to know the cancer had not spread.  They said my immune system was so low from the steroids that I was very susceptible to catch just about anything going around. Great. 

 

Present Day

 

So, this brings us to my current situation.  I'm happy to report that I'm finally feeling like myself again.  Once I was finally able to start the new meds, it took a few days but things slowly started to improve.  My clarity came back slowly, and I'm getting more energy every day.

 

My latest doctor's visit was on April 29th, and since I was still recovering from the surgery and all my other side effects, Dr. D decided I needed to take three weeks to relax and recover to a healthy state before we begin whatever he has planned for my future treatments.

 

I still haven't had my fourth infusion of Yervoy since it was delayed when I got sick, so that may be the plan to finish it out.  I'll keep everyone updated.  For now, I'm finally getting to enjoy my healthy state for the first time in over a month!

 

My Blog Goals

 

Sorry this post is so long.  That's what I get for waiting so long to start this blog.  But, that's my Melanoma story so far, and unfortunately it is not over yet.

 

One of the main reasons I wanted to start this blog was to share my story with everyone.  You never think about how to let everyone know you have cancer.  Having to tell a long emotional story over and over again sounded pretty awful to me.  I started reading many other Melanoma blogs, and it really helped me to deal with everything -- knowing I'm not the only one going through this crazy journey.

 

I also want to do my part to spread Melanoma awareness.  Although I can proudly say I have never been to a tanning bed, I can not say I always used the proper amounts of sunscreen and sun protection over the years.  I have had so many bad sunburns trying to achieve that awesome tan that I never really got anyway.  Totally NOT worth it.  I also did not go to the dermatologist for regular check ups.  All things I'm sure that led me to this point.  I don't want others to have to experience battling this awful cancer, and hopefully hearing my story makes a difference.  No one ever thinks its going to happen to them, but I'm living proof that just because you're young and feel fearless, you need to be proactive with your health! Get your yearly skin checks, put on that sunscreen, and stay out of the tanning beds!

 

I look forward to sharing my journey with everyone, and I can't thank all my amazing friends and family enough for being there for me through all of it so far! I'm truly blessed with an amazing support system!