Melanoma...I GLARE into your face directly and I'm not backing down... 2012 IS THE YEAR OF MIRACLES!
WAS THIS THE SUMMER I GOT MELANOMA? WEAR SUNSCREEN...
I never went to a Tanning Bed, NEVER cared about a tan, but I did grow up in CA going to the beach on vacations in the 80's during a time when sunscreen happened sometimes and hardly talked about. I went to the beach without a care in the world to have fun. I have gotten a sunburn...I never even thought about Melanoma...
All it takes is one sunburn...just one! This DOES NOT RUN IN MY FAMILY...
REFLECTION: Adios 2011...Welcome 2012. REFLECTION and New Years always go hand in hand. A bit of where I have been and where I am going... A bit of this, a bit of that, but always a tim when I ask myself...HOW CAN I BE BETTER?
This reflection time truly makes me realize that I DEFINITELY DO GET KNOCKED DOWN, BUT I AWLAYS GET BACK UP AGAIN. The more that happens to you, the more you realize you can be ok on the other side. FIGHT! Even if I am not physically here, this year has brought a contentment that I will treasure forever and that is something that can never be taken from me.
...A little information about my journey & my hopes in terms of where I see myself going with it.
MELANOMA, IT'S NOT JUST SKIN CANCER...Melanoma as much as I wish I didn't know you, I do and rather than living fighting the diagnosis, MELANOMA in many ways you have made me better. I choose to teach through you, lead through you, and INSPIRE! Never say you can't. I am going to be the ONE to beat this and YOU are going to be right there with me.
LET'S DO THIS!
2011 was the year of finding my peace, contentment, purpose, and light through the darkness and paths I never thought were meant to be. 2012 will only be an extension of that. Opening my eyes to see things and learn things about myself that I would have never let in or allowed myself to see "BM...Before Melanoma" My contentment is here, my happiness is NOW...I'm listening to signs and I know now I don't drive my ship. I can't choose the things that happen to me, but I sure can choose how I react to them.
I was having difficulty realizing that I have purpose other than Cancer and losing myself in being a stay at home mom, which I wouldn't change for the world but sometimes if you are "JEN" you are so hard on yourself that you aren't doing enough or making enough of an impact or being the best you can be.
I also missed being at the top of my game being a teacher and with CANCER again I felt like people looked at me differently and I couldn't just be Jen the mom or Jen the teacher, I was Jen that girl with CANCER...AGAIN. DAMN! I didn't want to be a victim, I wanted to do more and was fighting the fact that treatment is exhausting and I had to accept the fact that treatment was my job and that is ok. Had to let go of a lot. Had to accept the fact that it was ok to be "Jen with CANCER" and turn that into something meaningful.
I have always had a journal, but my blog was set up for me by a friend. WOW, am I grateful Mrs. Heather Berg! Blogging has reconnected me to my past, opened up a whole new world of new friends fighting this same fight with me and has enabled me to TEACH, help others and motivate which is in my blood and in turn ends up helping me define my purpose with and hopefully soon without the CANCER label.
It has helped me find my way through teaching again and motivating others in a different way. I want to touch lives...I now know I am. I have met some amazing warriors through blogging and it's an understanding I can't explain to you. I can relate to an 80 year old man as much as I can a 15 year old girl...I HAVE MELANOMA AND SO DO THEY. They just "get me without words" I am so thankful to all the precious gems I have met through this journey whether they be my personal angels at this moment who have succumbed to their battle or those fighting the fight with me. I am also thankful to my amazing support system of family, friends, and neighbors all the same. I am blessed.
My army of support is even larger with the friendships and support groups formed through Facebook and blogging and just a language that is understood. There is something about walking in the shoes that I have on that is comforting. My only wish is there wasn't as many people that there are out there. OUT MELANOMA...OUT...UN-INVITED IN US ALL. ALL OUR JOURNEY'S ARE PERSONAL AND LIKE US ALL, WE ALL HAVE OUR STORY AND OUR PERSONAL MUSIC TO SHARE. LET'S SHARE IT!
It has been so helpful and I want to say thank you to making my Melanoma world seem more manageable and less lonely. Although I find comfort in similarities I do realize like in life WE ARE ALL ON OUR OWN JOURNEY, OUR OWN PATH AND NOT ONE OF US IS THE SAME. That is the beauty of LIFE...Let's be open, let's share.....LEARN FROM ONE ANOTHER, KNOWLEDGE IS POWER!
A TRIP DOWN MEMORY LANE
SEPT. 2006 THIS IS AFTER I HAD WIDE LOCAL INCISION IN JUNE WHICH DIAGNOSED ME WITH THIS BEAST. IN AUG. THEY FOUND A POSITIVE NODE THROUGH SENTINEL LYMPH NODE BIOPSY AND HERE I AM GLAMOROUS AS EVER SPORTING THE LOVELY GOWN COURTESY OF THE GREAT DESIGNER...MD ANDERSON!
EVERYONE HAS THEIR STORY TO TELL WITH ANYTHING YOU DO AND IT'S NO DIFFERENT WITH MELANOMA. Even though there are many similarities with this disease, I know that my journey is mine and yours is yours so by no means to I wish to say It happened to me, so it will happen to you, but more to inform and educate. Knowledge IS POWER and it definitely is comforting knowing someone that has gone through what you have. For me, writing like I've said before is therapeutic for me. It's almost like it puts it out there so I have to face my fears. If I say it, I've committed and I intend on following through. It's motivating for me.
AFTER MY COMPLETE LUMPECTOMY IN MY RIGHT GROIN
I HAD NO OTHER EVIDENCE OF DISEASE IN THE ORGANS WHICH MADE ME STAGE 3C. OR 3B (CAN'T REMEMBER) AT THE TIME, I THOUGHT THE TREATMENT AND SURGERY SEEMED AGGRESSIVE AND CONSERVATIVE, BUT I WAS 30, ENGAGED, WITHOUT CHILDREN AND HAD A LOT OF LIVING LEFT TO DO.
I00% don't regret my decision.
There are many stories out there about tanning beds and the risks which I would say NO TAN IS WORTH THIS, but I'm talking to those people in which a tan was never really important or in my vocabulary. I grew up in California and travelled to Santa Cruz most every summer for family vacations and yes, I can say I have gotten sun burns, but never ever would I say I was a sun worshiper or worked at a tan. WEAR SUNSCREEN! I even remember wearing it, but...all it takes is one sunburn. It doesn't run in my family, melanoma just picked me. Cover up, be informed. Don't be naive.
My mole didn't even look ugly or weird, all I can say is I just started needing to go around it shaving...but stage 3 melanoma....NOT AT ALL WHAT YOU WOULD THINK. THIS IS THE YEAR, MY WORLD, MY LIFE AS I KNEW IT CHANGED FOREVER.
MY INCISION STARTED AT MY HIP BONE AND WENT ON FOR 14 INCHES...IT'S A GRUELING SURGERY TO RECOVER FROM...
I KNOW YOU ALL ARE THINKING...
...SO COMFORTABLE, NOT!
MY NEW LEGS AND FEET FOR ABOUT A MONTH...FANCY!
DETERMINED TO FIGHT FOR MY OLD LEGS BACK, BUT NOT PREPARED FOR THEIR LIMITATIONS...
AT THIS POINT I HAD NO IDEA THAT THE TERM COMPRESSION STOCKINGS WOULD MEAN SO MUCH!
4 WEEKS AFTER SURGERY....A BUMP IN THE ROAD...THAT BAG YOU SAW IN THE PREVIOUS PIX, WELL THAT CAME HOME WITH ME TOO. ALONG WITH THOSE TWO DRAINAGE TUBES IN MY LEG.
WE NAMED MY BAG "CHITLAN" HI
"CHITLIN" NEVER KNEW I WOULD REMINISCE ABOUT YOU AGAIN....I COULD ONLY WEAR SKIRTS AND NEEDED TO PIN THE BAG TO MY CLOTHING. SEXY! THAT RED YOU SEE AROUND MY DRAINAGE SITES...YUP, INFECTION...THOSE LANDED ME IN THE HOSPITAL FOR 5 DAYS WITH HIGH FEVER AND INFECTION....
ARE YOU GETTING THE MESSAGE? WEAR SUNSCREEN! IT WASN'T GOING TO HAPPEN TO ME EITHER!
Flash forward to 2011...THE PREVIOUS 5 YEARS HAVE BEEN FILLED WITH MIRACLES in their own right. Marriage to my soul mate, a child that I was told shouldn't be here and just wonderful years of clear scans NED( NO EVIDENCE OF DISEASE) and the confirmation in knowing that I had made the right decision in going through HELL with interferon treatment and surgeries.
Because Melanoma is so unpredictable in who it targets, what makes it come back and how it reacts to people in their own biochemical makeup, it makes it a BEAST to treat and a BEAST TO GET AHOLD OF. After a healthy pregnancy with my little miracle of a boy whom I couldn't live without, my doctors gave me the clear to try again. There was no scientific evidence that says hormones cause melanoma to grow. Breast cancer yes, melanoma NO. Some people it does, and some people it doesn't but there is no rhyme or reason. I WAS BORN TO BE A MOTHER AND THAT INSTINCT IN ME COULD NOT BE TAMED. 2010, was a year of miscarriages...
One at 12 weeks and one early at 6 weeks. Devastating in both of them. I'm an all or nothing gal and never believe in giving up on my dreams. I was going to do everything in my power to give Z a sibling. This is where I learned that I am not in charge of my ship...My God during this time, (I believe) was probably talking to me, I was just not ready to listen) I pressed on. I grieved, but you know what I during that time refused to be a victim again. I would try again....I LOVE BEING PREGNANT, I LOVE BEING A MOM. It was in my design to keep trying. Made sense, that is what I was always taught. Never give up.
The last pregnancy we really thought was going to stick. I had made it passed 3 mo, then 4 months, into maternity clothes, felt the baby moving and then BAM! My world changed FOREVER AGAIN...This time, my GOD was LOUD. I was awake, I was listening...I AM LISTENING!
Jeff and I just got home from a birthday party, It was Easter Weekend..."honey....come here! The tone in my voice said I meant business and that I was scared. Feel this I said. I put his hand on my thigh about 1/2 way between my wide excision and my lympectomy....it was a mass. I was the size of a small lime or large grape. It appeared out of nowhere... Completely overnight. Of course it was 6pm on Easter Weekend so there wasn't anyone to call. The fear set in, but I knew it was a tumor. Lots of anxiety that weekend. Called on Monday and the rest is history....
Melanoma was confirmed again. THE MONSTER WAS BACK. HOW COULD IT BE? I DID EVERYTHING RIGHT? I NEVER MISSED A SCAN, I PROTECTED MYSELF AND NOW I'M PREGNANT 5 mo. to be exact with a child I would cut my head off for. Conflicted and scared...no petrified is more like it was me. What do I do? More than ever, this is where "MOMENTS" came into my vocabulary. As a mom, you know you will do everything in your power to protect you baby even sacrifice your own life. YOU WOULD DO IT, I GUARANTEE IT...I WOULD. MY FOCUS ON SAVING US BOTH BECAME RAZOR SHARP because I had Zachary, and I NEED to be there for him too.
Monday came, and I was immediately sent for biopsy. Because I was pregnant and in protect baby mode, I wasn't willing to do anything to jeopardize the health of my baby. I did the full biopsy with no lidocaine. Melanoma was confirmed and surgery was scheduled.
I had just completed a year of grief over 2 miscarriages, was 5 months pregnant with what I thought was FINALLY a healthy sibling for Z (after all, I was the one that truly in my blood wanted to raise a mini preschool and never in my head did I dream that I would only have 1 child. This is where I feel like GOD was speaking to me, and I never saw the signs...This time, the sign was clear. 5 months pregnant, baby kicking, full maternity wear and guess what...I found a LUMP. My heart sank, I have never actually felt a tumor, but guess what I new it was a tumor. My cancer was back....I went to every maternal fetal specialist around and we were a go for surgery with an OB staff on site at MDA.
The next piece is when I realized GOD was screaming at me at the top of his lungs. It was either me, or the baby. My surgery was sched. for the following wed. which made it May 11th, that friday before I joined a study to follow healthy fetus's at Baylor. The reward for me, was free 4D images of the little one through ultra sound. Who wouldn't join a study to get a peak at their precious 1 more time....It's so surreal. I was all relaxed, I mean at this point thinking the pregnancy was gravy as I had made it through so many markers and felt the baby moving. I was 5 months for goodness sake.
That silence in the room happened. THAT silence that happens when you know something is wrong but they aren't telling you. I couldn't figure out what but I knew it wasn't good. I saw the heartbeat....the silence was deafening..."I'll be right back happened and in came the head doctor. More silence....just tell me already" and then they did. My baby had a lethal diagnosis. The kidneys did not develop which means the lungs wouldn't and would either die in the womb or be still born. 100% lethal diagnosis. The room went black. This was supposed to be my fun appt. The one where I saw my little one in 4D...? Oh my goodness, who am I? My life flashed before me. Now I lay on the the table with confirmed melanoma tumors in me, trying to process the fact that they are telling me my baby won't make it and quesitoning whether or not I would be around for my son.
THIS IS WHAT I MEAN, GOD WAS SCREAMING AT ME. HE KNEW I COULDN'T TERMINATE A HEALTHY PREGNANCY. He knew that. There is some reason I am meant to be here and if it's to teach and motivate then that is what I am going to do. I had the surgery for melanoma and a week later, we removed my baby and the hopes of ever becoming pregnant again. Devastating couple of months, well a void that will be hard to fill forever...but you know what,
"I'm Jen...and I GET KNOCKED DOWN, BUT I GET UP AGAIN AND AGAIN AND AGAIN..."
SCANS AFTER THAT SCARE CAME BACK CLEAR....I WAS NED FOR 2 MONTHS. The end of June, a lump on my incision site appeared...headed back to MDA and this is where I find the world I live in now. Took a picture of it, they made me an appt. on monday (of course another long agonizing weekend of worry) and by the time Monday came, I had lumps in my breasts and one, again grape sized "down there" Lovely location. The beast was on fire, and it was taking over fast. I did scans and realized it was everywhere. It was in my spine, my bones, my lungs, my abdomen, my liver.....
NOW, I'M STILL JEN...BUT SOMEHOW I WEAR THE:
STAGE 4 MELANOMA LABEL
NOT THE VICTIM
I WILL BEAT THIS
I WILL SEE YOU TO A CURE.
NOBODY TELLS THIS GIRL NO...
ARE YOU WITH ME?
Surgery to remove the tumor in April...Because I was pregnant, this tumor for ethical reasons could not be used for a future "what if treatment" called TIL harvesting.
Instead of tattoos, I wear my scars with pride!
After that melanoma was cut out in April and CLEAR SCANS FOLLOWING...that tiny purple dot is what ALERTED ME TO GO IN. Can you imagine if I hadn't....? God is good. The Melanoma was taking over. That picture was taken on friday. I got an appt. for monday and between then and monday 2 LARGE tumors grew. One on my right breast, and another in the lovely spot of going to the bathroom. Scans showed it had spread EVERYWHERE! IT IS AT THIS TIME WHEN I TRULY FELT THE FIGHT OF MY LIFE.
THAT IS ME...
I'M PETRIFIED, BUT WILL BEAT THIS...I KNOW IT.
MORE SURGERY AND MORE SCARS...THE BREAST TUMOR AND THE 1 DOWN THERE (LOVELY!) WERE REMOVED...These tumors are hoping to be grown for TIL. They were taken out and Dr. Ross was in shock. My body was eating my cancer itself. The tumors were Narcrotic. My immune system from not having a fetus was ramping up and attacking the cancer on it's own. There is a GOD. This is before Zelboraf was FDA approved and we put my biochemotherapy treatment on hold. HIGHS AND LOWS, UPS AND DOWNS.....BUT NEVER QUITTING THE RACE.
THAT SO FAR IS MY JOURNEY TO STARTING ZELBORAF.
Now I stare Zelboraf in it's face, hoping it's working, dealing with every side effect imagineable and not caring if it's working. WARTS, RASH, EXHAUSTION, SUN SENSITIVITY...you name it, I've seen it...but anything for Melanoma to be gone.
I see the Dermatologist on thurs. Let's hope they can shed some light on getting these lesions out of my throat.
I WILL SEE THIS TO A CURE, AND HAPPY TO REPORT...I HAVE A HUSBAND THAT WILL TOO...FOR OVER 5 YEARS, HE'S NEVER LEFT MY SIDE. NOW THAT IS
2012 IS THE YEAR! THE YEAR OF MIRACLES OF ALL KINDS...
I BELIEVE ~ DO YOU?