The Big, the Bad, the Ugly and the GREAT!---FINDING OUR NEW NORMAL!

      They all exist in everyday.  There isn't a day that goes by when I'm not in pain whether it be pain from the melanoma or joint pain from the BRAF and fatigue YES is definitely a part of this combination. This causes so much frustration sometimes I want to explode.  So, thankful Z has a stable place for school so I can take care of myself, but days that means I rest to try and keep going and keep happy the rest of the day.   I get down on myself feeling like I'm not accomplishing anything, but the truth of the matte is I'm exhausted.  I'm not sure what I would do without my mom...she helps keep up with house stuff and Jeff takes on more with the night routines and I'm so thankful.  I'm working through not feeling guilty.  I wish I didn't need so much help and wasn't so needy.


     My normal stress relief is exercise or a bubble bath and that too needs to be redefined as well as just walking can irritate my back and hip, I need to be extra careful in the sun on this medication sun sensitivity and burning really easily is real, and well I'm still nursing my incision and bubble baths are not allowed still.  I'm not writing this to be complaining, I'm writing this to report a reality.  I'm really having to work hard on the reality that yes, these are road blocks, but I do have a CHOICE.  I can decide how to redefine how I get the same joy and that is where the work begins.  I can't change what I have, I can change how I react to it and not fight the fact that I am going to need to find new normals.  On the outside, I look 100% normal other than the girl that seems to wear comfy clothes and sweat suits most of the time....lol  


     With a 3 year old, there really isn't a choice other than to find your center and GO!  Zachary is definitely my strength and what pushes me to appear and be SUPER HUMAN.  I'm not, I just incredibly motivated to not let this BASTARD BEAT ME!  It won't, but somedays it does and that is because somedays I realize I need to let myself feel so I can fight again.  The piece that has been a challenge as of late has been the LONGEVITY of this fight.  It hit me the other day, that there really isn't an end to this treatment.  I have to find that space that doesn't look back and is thankful I have this as a choice, but BRAF isn't easy either and it feels like a lifetime of sacrifices.  It feels good to write this in the event I can help someone else that realizes the chemo no matter what it is you are on is HARD but there are CHOICES, support groups and help out there too.


       I fight because I want  Z to know and realize and learn without words that things sometimes are not fair, things sometimes really suck, but it doesn't have to be the end of the world.  Kids this age learn BEST without words.  I want his character to show that I care enough about his character to not expect something from him that his mommy isn't willing to do herself. I never want to preach to him, but teach values without words and through our action.  Much more powerful.  I want him to wake up one day and have an "ahhh haa" moment and say, I always knew mom had Cancer, but I really had no idea how much she was hurting because she always found that space to be silly, make sure she found a smile, and I never felt like she never was available.  We don't give up and there is always a space in the UGLY that can be found that is BEAUTIFUL.  You have to accept the UGLY to find the BEAUTIFUL.  


     It is in this desire that I had an "ahh haa" moment the other day that needs to push that desire a step further.  I want my husband to feel the same way.  I realized this the other day...As much as I have him for support, I need help in learning how to be there for him too.  I'm not shy to report that we have started going to counseling and yesterday was our first session.  How cool is that, that I have a husband/partner and he has a wife that LOVE one another enough to learn how to REFILL our own personal cups so we can learn this NEW NORMAL together and GROW together.  Everything we thought we knew is DIFFERENT...everything has changed and we need to learn to change and grow with it instead of fight what used to be or how we used to handle things.  This is NOW.  It's tough and there has been some parallel moments in our family just due to the pure exhaustion it takes dealing with Cancer and then Z and not to mention all of the grieving I have felt handling the loss of pregnancies and the finality of never carrying a child again.  It's a lot on a relationship and a family.  You know what though....Honesty really does help in the healing process.  It works!


      The pain not something I want to keep talking about because I feel like such a "Debbie Downer" but it's ALWAYS there as a reminder to make everyday a blessing.  I feel like it's important for people to realize that many of us have "circumstances in our lives that aren't fair or seem like too much" but what has helped me is being RAW, HONEST, AND AUTHENTIC about it.  I'm not hiding that Cancer SUCKS...it does. That is where I get my motivation because I am learning to allow myself to feel so I can get angry enough to fight, move on, and exist in a space that is healthy.   As much as it may appear that I'm holding it together, there are times when I'm not and that is a truth that I feel very strongly about reporting.  The people that see that the most are my mom and Jeff.  I don't have my normal "get up and go" but when facing the world, put my best foot forward.  I look a lot different and on the outside than I feel on the inside.  


      I do see myself as a fighter and a strong woman, but it's very important to me to report the human side of Cancer, the fact that I am in fact human and I do have days in which I wish I can take it all away and stop the bus and shut down.  I have so many more limitations than I did and I have allow frustration to creep in because as I start to figure out how to navigate my world on "chemo/BRAF for LIFE" the need to establish a "NEW NORMAL" has been so necessary.  


      I see the fatigue and effect it has on my immediate caregivers and there are times when I cry so much for what feels to be the burden I have put on our family.  Everyone calls me AMAZING, inspiring, MOTIVATING, and  and and and yes I do know this about myself but I'm also not anymore AMAZING than any of YOU.  The very essence of being HUMAN is AMAZING and I strive everyday to see the cards that are dealt and BE the BEST ME that is possible, but that doesn't always happen.  


     All my medicine causes me to be moody and feel like an alien and has an effect on Jeff and my mom the most.  I carry a guilt for this, but the counselor did help me realize that guilt is something I should feel if I said say "I was an honest person and then lied deliberately in front of someone's face."  Cancer isn't something I chose or anyone chose and she reminded me that guilt isn't allowed.  I am not doing this to the family, it just is what it is....Important for me to hear.  Medication isn't something that is my go to, but I'm open to it when necessary.  I cried the whole hour and got many things out in yesterday's session and am willing to try a new drug to hopefully help with quality of life and the anxiety's that go into the worry of the future and things that are out of my control.  I start tom. and will report how it goes.  It's called LEXAPRO.  We'll see!




http://www.lexapro.com/


http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000214/


Love to everyone...Have some exciting days ahead.  My cousin Christi will be visiting Halloween Weekend and growing up we spent every summer and every other Turkey Day and X-mas together in Santa Cruz...It's been over a decade since we have seen one another and I'm so excited to give her a hug and have her meet Z.  Jeff's Dad "GRANDE" will also be visiting as he heads home from a business trip.  This is a challenge in and of itself as he has his hands full with Claudia fighting her own fight right now and under going chemo so we understand the challenge to "get away".  Cancer isn't a one man's job.  We are fighting together.  Love you to Claudia...Keep it real, keep it going!  Family is everything and it means so much for them to make a trip down as everyone has so much going on and we aren't always the easiest to visit because sometimes we just want to keep things simple.  


     Another fun thing we have on our plate is we are FINALLY taking a family photo!  I'm very much looking forward to this as it is incredibly important to me.  Pray my rash stays in check...We are doing it the weekend of Nov. 5th and couldn't be more excited!  We know we are loved not just from our visitors, but from all our family and friends EVERYWHERE.  WE are grateful to have the courage to share this journey with you so openly and honestly.  That is a gift.  


LOVE YOU ALL!

I get it! "It Really is a GREAT Time for Melanoma" I can't imagine having this diagnosis in 2006 with Interferon as my only treatment option...I "get it"~

Happy to be typing today:

    You have no idea folks...no idea! Happy, independent, and moving! I will do anything to stay on this drug and can understand now why everyone at MDA said to me, "It's a great time for Melanoma"  I can now add to my list of things done is experience the pain of Melanoma which I hope non of you ever experience in a lifetime.   I can see how fast Melanoma can destroy a body and thankful this diagnosis didn't come to me in 2006 where interferon was my only option.  Dose went up again today, you will just have to take me itchy, achie joints, and spotted. Never again do I want to experience that pain. I even took Z to school. Everyone is happy, now off to have fun with my Sister. She saw the lowest low and now a high. Great way to end her trip.

     Truth be told, I was genuinely scared this past week and this ride took me to a really dark place of scary "what if" thoughts which is why such "elation" today. This drug is def.  not without trade-offs but I'll taking managing something "chronic" over the latter any day. I'm in shock. Our family is in need of MOM back and today she is :-) Please bare with the roller coaster this is, but thanks for coming and making me feel like I'm not riding this alone :)  Now it's up to me, to dance with the side effects monkey with dosing and the cremes and other drugs to keep the joint aches in check along with the rash...

Jen

BRAF I know I NEED you...BE KIND! ALIVE AND KICKING TODAY~

Thank goodness today is a better day!

     Just a reminder that everyday we get out of bed and see the world should be  a precious day because at any instant it all can be taken away from us no matter if we are young or old.  I've learned to appreciate moments.  Today I have found my happy and I realize that BRAF is buying me time.  Time is all we have until there is a cure, but I will do anything for time and anything to never experience that PAIN I felt again.  Pushing for 2 1/2 hours with no epidural didn't even skim the surface.  

      I know it will be a roller coaster and I will need to rely on all of you in my times of darkness.  As fast as it hit, it's a reminder that I need to be grateful for everyday where I feel healthy.  I got a taste as to without help how fast this monster can destroy a body and  how lucky we are to have BRAF.  

      Tom we will go up to 2 pills, but I'll take a rash over that pain anyday.  I thought I was dying I was declining so fast.  BRAF def. does something. The pain left almost instantaneously!   I got Z dressed today, took him to a make up swim lesson with Auntie and Grammy and got out of the house to give daddy some peace and quiet until 2pm.  I'm now back home and resting so hopefully I will be able to put Z to bed.  I feel alive today and that is worth its weight in gold.  

Never take any moment for Granted... Not even a second.  Roll Call...I'M HERE!  I'M PRESENT TODAY...

love you,

Jen

MELANOMA LEAVE!

Update:  So, the pain I have felt the last two days has been worse than anything I could even explain (coming from a girl who pushed for 2 1/2 hours dilated at 10 with no epidural with Z..HIGH pain tolerance). I essentially was paralyzed at my hip and any movement would cause me to get sick.  REALLY SICK.  On so many pain meds and bed ridden for 2 days. I've needed to be lifted out of bed so I can crawl to the bathroom and literally have felt like I had no use in my left leg with excruciating pain.  This of course means no sleep for anyone and very uncomfortable.  I've been in the ER twice..  Haven't eaten in 2 days.  I feel badly Jeff had to cancel his time away with Colby and the boys, but it's been a fight over here.  

Today, I took 1 BRAF pill: 

I'M WALKING!  WITH A LIMP, BUT I'M WALKING"  I also ate a small meal.  Here's the tricky part, my rash is coming back.  GOOD LORD, please pray I can endure the RASH WHIILE I KILL THIS BEAST!  The trade off''s can be frustrating...A TRUE FIGHT IS WHAT I'M UP AGAINST. ENDURANCE, STRENGTH, CALM, PEACE!

PS...had to start prednisone again so a bit jumpy.  Please pray I can someday put this all behind me.  Our family needs a break.

love you guys...wish I had a better update, but it is what it is.  At least I'm back on BRAF and feeling better than while off....i guess it means back to itchy and scratchy.  We knew it was going to be a fight and a fight it is turning out to be.  Happy to have my sister here.  I know BRAF works, we just need to pray I can tolerate the rash and it WORKS for a LONG time.  I have never ever been in so much pain.  MELANOMA LEAVE!

Jen

ASPARAGUS...CHECK IT OUT, It's an interesting read if anything...

It can't hurt, can it?  I love asparagus... Why Not?  hmmm?

http://www.snopes.com/medical/disease/asparagus.asp

It Might Be Necessary to Wear a Sign That Reads:

Please Do Not Worry ... I am NOT Contagious!

Don't worry, this drug has very little side effects..."Some People May Develop a Rash" You Think?

They they weren't joking, were they?  That is one mighty rash I might add.  Holy Smokes Batman!  Well, part of the reason they don't tell you everything is well the doctors I entrust my life to everyday at the Best institution in the world don't even know for sure.  This drug is so new that as more people go on it, the more information they gather.  I had every medical student, chief of chief, doctors from other dept., PA's coming to look at the craziness on my body.  They ordered a professional photographer to come up and take pictures because to date at MDA, I was the worst most severe RASH/side effect from this drug they have seen. Remember, this drug is supposed to be the "miracle drug" with little side effects. They were in utter shock when I came in.  Dr. Kim knows now that if there is a side effect my body doesn't mess around.  Hopefully it just means I respond to the medicine violently because it's attacking the cancer.  That is my hope and what keeps me motivated.  There has to be good in all this terrible.  I know there is.  My goodness, it's safe to say I'm not over reacting when I mention being uncomfortable.  BRAF-Zelboraf whatever you want to be called, you sure did a # on me, but I can guarantee you one thing, we'll attack from the other side.  This fight isn't over!  The picture you see above is of me sitting down.  Those are my upper thighs when the rash wasn't even at it's worst. So itchy, swollen, tingly, uncomfortable, and painful.  Yes, I have been slightly irritable.  I can't even get settled in my own skin.

This photo was taken the next day.  This was after the emergency room visit and the dr. visit the following day.  The emergency room was a painful experience on us all.  We got there at 10:45 and waited to see a dr. until 2:30am.  I would have much rather been in my own bed.  No one got sleep that night.  They finally pumped me with steroids and a strong dose of benedryl and home I went around 5am.  Just in time to get Zachary ready for school.  Long day, we were all grouchy.  When we ruled out "Life Threatening" such as Steven Johnson's Disorder or any form of Herpes complex I decided to stick on the medication and try and add 4 new Rx.  Rx creams, wraps, steroids...you name it.  Well, I did it all and nothing was easing the pain.  I called on Friday and sent in this photo.  I was immediately told to stop the medication to get ahold of the rash and we will have to decided on a Plan B on tues. 


The grey/start/stop is what is so difficult on our family.  We get wonderful news and then there is a setback.  I could really use a dose of the middle ground, but let's face it, I've never really reacted that way in anything I do in life... All or nothing once again.  You can't say I don't give it my all on both ends of the spectrum that is for sure.  The most disappointing part for me is I could physically tell that BRAF was working on my melanoma.   A week ago Monday, when we started the drug my hip was in so much pain due to the metastasis that I needed a wheel chair to navigate to my appt.  Once I began the drug, my pain went away and I was bouncing around as happy as ever.  Until almost exactly one week in...BAM!  Melanoma said, Not so fast Pretty Lady.  It's WAR now. This is when I showed signs of a severe allergic reaction to the drug.  My whole body was purple, red, and swollen, itchy beyond comprehension.  Just one of the most uncomfortable feelings I have ever felt.  This is my stomach the next day.  I know, it's hard to look at.  Like I said in my facebook post, the best thing to me is how completely un-affected Zachary is about my appearance.  A child's perspective is so wonderful.  He just sees his beautiful mommy that helps him everyday and to him, yes he wants mommy better but really it is that simple.  I love you my Melanoma Warrior!

This picture of my legs below are from today.  I'm still in a lot of discomfort and have been in bed most of the day.  I'm on a reg. round of benedryl (strong dose) which knocks me out, alternating with hydroxyzine, prednisone, steroid cremes...wraps, you name it, I've tried it.  I do see some improvement in the rash since not taking the medicine last night  nor this morning.  At least you can see more of my normal coloring, but the uncomfortable and itchy feeling will take some time.  Dr. Kim made it seem like we may try the drug again once my rash was gone at a lower dose, but I'm not sure enduring that  is better than the nausea.  I was miserable.  We'll see what they say on tues.  I do look a little better.  Still gross I know.  

As I close this piece, I wanted to take the time and let you all know that you are loved and appreciated.  Many of you have been continuing to contribute in monetary ways, emotional ways,  and for many of you it's your presence and belief in my fight that keep me going.  I appreciate you all and all of your efforts haven't gone un-noticed I assure you.  I may not have the stamina to get back to you like I normally would, but please know I'm GRATEFUL.  I feel loved...Now to finding a different path.  GO AWAY RASH!  GO AWAY MELANOMA!