Friday, September 23, 2011

Please Help Me Pray for Catherine Sellers Smith

Please send prayers and positivity that her melanoma begins to reverse itself with her BRAF pills. My heart aches to all suffering with illness. We need to believe in the power of positivity and prayer and I'm trying to get more people praying for her just as you are for me. Let's together, KILL this MONSTER!

She is now at MDA struggling to find pain relief and melanoma has now metastasized into her brain and is beginning to crush bones in her body. Please BRAF can you reverse this pain this young mother is experiencing. This is her 1st dose this week. She is just shy of her 28th birthday, her family is her everything like mine and she wants more than anything to be there for her children to many many years to come. I asked her family if I can do this. Putting a face to melanoma, creating awareness and sending prayers is a step in the right direction. We need a cure!

Catherine at MDA with her beautiful daughter Trinity

Catherine is a fighter and the face of pure endurance. She has tried chemo and has undergone several rounds.

Send Prayers... this is before treatment.

Catherine is a beautiful wife and mother of 3, stepmother to 2 and is married to Ron Smith. I met these two strong souls at MD Anderson in May while she was undergoing the surgery I had in '06 and I was getting tumors removed from my re-occurrence. Our stories connected and we share in this battle of Melanoma. This is Catherine before I met her with her oldest Daughter Gracie. Melanoma is ravenous in her body right now and I'm asking for your help in saying a prayer for her while she battles this beast along side of me. Thank you. It's tough to see those you care about struggle.

Love you sweet Catherine, let's bring this beast full circle and get back to when melanoma was not even in your vocabulary.  Please send positivity and prayers for this family.  Let's put a REALITY to this disease and fight for a cure.  WE BOTH NEED IT <3.  I pray the BRAF begins to work and heal her body and she is able to go back home to where her children are in Dallas.  She misses them terribly.  Hugs...

Thursday, September 22, 2011

Zelboraf: It's TIME, it's HERE. WARNING: May cause skin cancer/primary site LOL

    CANCER SUCKS no matter how positive of a person you are.   It SUCKS in the sense that it messes with your mind, it messes with your family and as much as we are receiving wonderful news, this whole thing has put a tricky kink on our family.  We go from highs and lows in one day pretty often.  This last month of being in limbo and not knowing has been beyond tough... The FOOD CALENDAR has been a blessing and I can't tell you how much it has helped knowing I don't have to clog my brain with that.  Everyone contributing monetarily, or by food it means the world. The good news is there are organizations and good people to help make those unbearable feelings feel a bit more bearable.  I recently stumbled across a cancer magazine that I subscribed too.  I recommend it for anyone of you that knows of a person going through this beast.  Knowing people in your same situation makes you feel comforted and not so alone or crazy in your thought process.  Here's the link to the magazine: I want to help others as much as I want to help myself.

     Another wonderful organization we stumbled across is CAN CARE.  Someday I hope to be one of the volunteers and also hope to volunteer down at MDA.  Here is their website:

     Now this organization was another serendipitous stumble.  I was getting my teeth cleaned at my dentist, Dr. Hunsaker whom I adore and was referred to me by our pediatrician, whom I also adore.  Like I said good people surround us.  Anyway, her cousin happens to be the CEO of this Can Care org. and she gave me the info.  I'm so glad she did.  I got linked to a wonderful lady, a melanoma stage 4 cancer SURVIVOR!  I have been in contact with this lady a couple of times through email and plan to meet and begin a life long relationship.  She's a GEM!  It is so very important to not hide your true emotions and just be honest.  It's OK to have bad days and it's OK to admit you don't like your moods.  It's going to happen and all we can do is do the best we can.

     When we found out we were going to begin BRAF Treatment we were elated...  A PLAN then comes the fine print. With Melanoma or any Cancer there is always a fine print.  "Watch your body carefully, it can cause rash, warts, extreme photosensitivity to the point where I will need to purchase special clothing and need to be VERY careful in the sun even for 10min.  Oh, and it can cause skin Cancer... Did I forget to mention that....I thought to myself...SKIN CANCER?  Don't I already have that?  lol  Can you hear the irony?...

     Here Jen, take these pills, it's a miracle and one of the reasons "It's such a great time for Melanoma"... Don't worry one of the side effects is that it can cause skin cancer?  HUH?  Don't worry, it totally makes me laugh and I'll explain... but have to hook you or you won't read, eh?  HA!  HUMOR is IMPORTANT! Ahhh, the world of Melanoma, why do I know you so well? You are a tricky silent manipulator. You know what though... you can keep trying, I'M going to BEAT you.  The reality is yes, it can cause squamous cell carcinomas which can be removed by cutting them out or melanomas that can be cut out but the chances of it going further than that they tell me are slim. I may just lose a chunk or two, grin!   This drug is so new, I'm relying on FAITH.  FAITH in GOD, FAITH in the DOCTORS., and FAITH that I am at the #1 Cancer Institute in the country and my medical oncologist Dr. Kim was one of the people that helped get this drug FDA approved.  That is lucky.  I am lucky.

I apologize in advanced...I jump around, it's just what a do, lot's to get out of my brain.  The one commitment I promise to make to myself and to you is I won't sugar coat anything.  The only way for me to help myself and others is to be HONEST.  HONEST here are...NO HIDING HERE!

About the drug...

     Trust, me at the moment a MUCH better option than BIO-CHEMOTHERAPY and it's DEFINITELY NOT Interferon... PRAISE GOD!

    Here is the background as to how we decided it was time to begin treatment.  All was going along well and my body was doing it's part and shrinking those darn tumors on their own after my hormones regulated, but I was beginning to have SEVERE HIP pain and pain in my back that was beginning to become debilitating.  On Monday when I went in to see dr. Kim I need a wheel chair to walk and get up to clinic.  That is not good.  The scans showed that some of my metastasis were still stable if not smaller, but there was one in a lymph node close to my heart that was larger and the ones in my pelvic area were larger... hence the hip pain. Pain causes anyone to be grumpy and snappy.  I admit that was me.  I was in this outer shell of looking normal with an incision by the panty line that is still popped open and in need of special wound care, and radiating pain all down my left side.  None of this you can see and geez it gets old to tell my predominant care givers Jeff and my mom that I'm snappy and in pain.  They are getting the brunt of my moods which makes sense because we all do it and it's the only place I have to fall into open loving arms, but I will say it was beginning to take it's toll on both of them.  I'M SORRY.

      It's hard to watch the stress on their faces and know why it's there and then still snap because you hurt (PHYSICAL PAIN).  The caregivers in this whole scenario need help too.  They need ribbons and acknowledgement and breaks like the one fighting.  Last week was a hard week of living in the grey and no one really knowing what their plan was or purpose was.  On top of it all, Zachary was sick so that in and of itself is enough the want to just fall apart.  Last week was tough.  On Monday, we made the dec. to start because once melanoma decides it's time to spread, IT'S FAST and takes on a mind of it's own.  We didn't want to lose site of progress.  We are one of the lucky ones that insurance covers the drug.  Without our insurance we would be looking at covering $12,000.00 to $13,000.00 a month out of pocket!  Holy GEEBERS!  Liquid GOLD, I better not lose this stuff as the ins. company won't replace it obv. and missing a dose loses the effectiveness.  

     I started doing the math...I take 4 pills in the morning and 4 pills at night, we are looking at $400 a day, $50 a pill to take this drug.  INSANE!  We are lucky to just pay a $50 copay.  Thank you KPMG!  I asked Dr. Kim how long I will be on this drug and the answer is they don't really know....Until it stops working.  Let's pray it keeps my melanoma manageable for a very long time and I can adjust to the side effects.  It could be a lifetime of chemo.  My condition like I have mentioned before is chronic.  I will do anything to see my son get married to a wonderful partner in crime like I myself have found.  Some people, the drug stops working after 2 mo. and some people it's still working after 3 years.  Time is what we need.  Time=more research and more options.  If this was my diagnosis in 2006, I wouldn't be sitting here typing.  I would be DEAD as my only option was interferon.  In 5 years there has been amazing advancement.  After BRAF stops working there is another drug to try called:  

YERVOY (ipilimumab)

This is also new along with the TIL treatment.  

      My condition at the moment will be called chronic until there is a cure.....I pray that I live long enough to be part of the world where MELANOMA has a cure as easy as the chicken pox.  

    As for the protective clothing part of treatment, here are some sites that were recommended to me:

also look for upf 50+ clothing at REI, Academy, and Whole Earth Provision

They told me that sunscreen provides a false sense of security and that I really should be wearing UV clothing...

     As for the Zelboraf, did you know that there are only 12 Pharmacies in the entire USA that have the drug....12, ONLY 12 and MD Anderson is one of them.  LUCKY AGAIN.  

    I'm full of information today.  Here is another discussion forum that has been tremendously helpful in a positive way regarding the less bleak outcomes of melanoma you read.  This site has been another site of hope and answers from REAL people battling this disease and a place where I can post questions if I have them.  So Important!

      I'm about 2 days into treament and I can tell you that I wake u very nauseas in the morning, but not like Interferon and I'm not in the hospital. About an hour after the dose, the body aches start.  Tired...YES, joints achie...YES, Nauseas...YES! However, it's def. not Interferon and so far with BRAF treatment I can be functional with limits. I'm going to need to learn how to pace myself and learn my new normal. Moment to moment, YES.
Again manageable, but def. don't feel wonderful.  I do get headaches, but find that pain medicine does make it ok.  This drug is something I can see I can live with, but I will need to pace myself.  I'm not sick, sick, but def. need to pace myself.  That component will be a challenge for me. Again, it's another GREY and I'm learning a new normal.   I'm operating, but I'm operating on a 1/2 tank of gas with a desire to go full speed ahead.  I'm thankful Zachary has a consistent school environment he can go to so I can take care of myself.  Thank you Jenny :-)

Here's how I choose to live and will leave you will some facebook status updates of mine that tell a bit of the story.

I LOVE this that I read from a friend's post today: Be the kind of woman that when your feet hit the floor each morning the devil says "aw crap, she's up!"

I need to surround myself with wonderful :-) this is a good start and gave me a chuckle. Laughter heals the soul.

Looking for my sense of structure/routine? Anyone seen it?   Feeling completely out of control of most things. Life is on super speed with too many moving parts and urgent matters to tend to. Slow down please a please provide me some energy :)
                GREAT advice from a Ron, the hubby of Catherine who is fighting this beast right along side me:

"Remember sweet Christian sister of mine, we are only passengers. Quit trying to drive the train."... This is so well put and something we all could use to steer our ship.

(I ask that all you praying for me, Pray for Ron and Catherine's family.  They are fighting this beast and need some relief from this horrendous disease immediately.  Please say a prayer and send positive thoughts their way too)

OK, Zelboraf...Time will tell!  Let's see what you've got!  Love you all my friends and family... today's post was a long one.  I hope it left you informed and with some good tips/advice to help others you may know in a similar situation.  

Until Next time....JEN  <3

Monday, September 19, 2011

Extracted from a Coping with Cancer Magazine. It spoke to me, I liked it!

More updates to come on my Dr. Appt. Soon...I will be starting the BRAF treatment :-)

The Circle
by Jan M. Bianchi

There is direction in uncertainty.
There is resilience within.
Arising like the sun
Shimmering like the stars,
Spirit exceeds everything.
Time and place have no relevance.
Crossing into the unknown
With no guarantees,
Surrounded by doubt,
Shadowed by darkness,
Directed to the Light.
Called upon the path,
The heart will come to recognize
Its name and place for the first time.
Trusting in spirit
Intuition at hand
The circle will close
The place shall be known.
Soon it will be discovered
That a bridge was created
In the passage of the journey,
As each step was taken
And each question answered.

Tuesday, September 13, 2011

Yesterday's Dr. Appt. Update...

     Yesterday was quite the circus when I write down all that transpired, but in reality the timing of events really wasn't that bad.  Jeff and my Mom made what could have been a stressful day really rather ok.  Here's the play by play.  So, Jeff drops me off to go get my chest x-ray and he was fully prepared to go check me in at the dr. because really all we do is wait.  I get done with my chest x-ray I call Jeff to see where he is in line.

     Well, he never made it up.  Right after we dropped Z off our Explorer started steaming and immediately Jeff knew we had a big problem on our hands.  It appeared to be the radiator hose and if he drove it anymore it would have ruined our engine.  Thank goodness he was with me and thank goodness we were not on the freeway.  This is the thing about timing that I see as lucky.  Now, Jeff parked the car and called a tow truck.  I was supposed to drop Jeff off at work after my appt and well that didn't happen.  So much for trying to keep a normal routine, but one thing we have learned in all this is to go with it.  I am proud of the way we handled this and I will say I wouldn't have been as calm if Jeff wasn't with me.

     Now, at this point we knew we were stranded.  This is where Grammy comes into play and we are so thankful to have her here.  At first she wasn't reachable so I called some neighbors to see if they could go knock on our door at home, but eventually she picked up her phone and we learned she was outside.  This is the part about my mom that just makes her special.  She as in no shape to go anywhere, but through  on some clothes tired and all and drove our other car down to meet us with zero warning.  Oh, what would I do without my mom or Jeff.  Not really sure.  Anyway, Jeff ended up going with the Tow Truck guy and our car to the repair shop and Grammy was able to drive me home.  All and all it ended up working out and we managed to finish my doc. appt, get lunch, and meet Jeff with a rental car and carseat removed in time to get Z from I said, it could have been a lot more stressful and I'm glad it wasn't.


     Ok, here's what the docs said.  The tumors on my lungs are still stable as shown by the chest x-ray which is good, but the hip pain is causing him to want to order more tests.  We do know we have tumors in my pelvis area, but what we don't know is if they are growing.  What I do have that is different is terrible pain.  Thurs. I will be down there for blood work, MRI of T7 (spine more localized) and MRI of my hip.  Friday I have a CT scan of chest abdomen and pelvis to check to see what is going on with what I call my "juicy organs" like liver, stomach, intestines etc.  We will meet with Dr. Kim again on Monday afternoon and see if putting off treatment is still in the cards or whether or not we proceed with something.

      What has changed since last time is the fact that the pecking order as to what treatment will be used 1st now is no longer Bio Chemotherapy.  If it appears that treatment is necessary due to tumors growing again, we will start BRAF.  The hard thing to stomach about BRAF is this is a regiment that I will have to be on for a very long time if not for LIFE.  That is a little unsettling to say the least, but will do anything.  The side effects are supposed to be less, but it's not something that ever leaves me.  I would take 4 pills in the morning and 4 pills at night.  58% of patients show considerable shrinkage on this drug but they can't guarrantee it gets it all and those that discontinue the drug have been shown to start metastasizing again.  I won't know what my side effects will be until I go on it so just have to wait and see.

     The other option for me is say, nothing on the scans show tumors growing from before then I may have some localized radiation treatment to my hip and spine to help try and eliminate some of my pain.  I do not like taking so many pills, but it is necessary for me to funciton normally without pain.  I'm still doing all the positive meditating, visualizing, and praying which in this all is what keeps me sane.  Again, I will know more Monday afternoon.

     I do know that the life I have is good and aside from Melanoma (and a small encounter with this flu virus for Zachary and myself this week) I feel healthy and happy.  This is and probably will be my life for a very long time and the way MDA describes my condition to me is it is like anyone dealing with chronic illnesses such has high blood pressure, diabetes, etc.  Do I like that I have this...NO; however, it is not going to stop me from living life fully and happily.

   I have been in bed most of the day trying to shake this flu and Z has been in and out.  It's hard to get a 3 year old to realize he is sick when his fever breatks, but he does still go in and out of fever so I know he will be home from school at least one more day.  He's sad he's missing his 1st day of soccer and all I want is our family to get to feeling better.  Sick isn't fun no matter how young/old you are.

love you all,


Sunday, September 11, 2011

The Strong Desire to Be Translucent...

     Do you remember when Swatch Watch came out with the Jelly/Translucent watch where you could see the inner workings of how a watch actually functioned?  I do, and wish I had that capability with my own body.  How cool would that be, right?  Then there would be no need to explain myself or justify my actions, people would just know..."Leave Jen alone for a bit, her spine is red, she prob. won't ask for help I'll just fill in the pieces."  I know it is a weakness of mine to ask for help, but really the confusing part is I like being in, Control issues?  Now we won't go there.  grin...remember, I'm honest  lol....

     In all seriousness there is something refreshing about feeling independent and normal and I think I have gained tremendous empathy for the elderly when  say for example Grandpa who has been independent all his life gets told (not asked) his car keys will no longer be available to him.  I get it.  It's a hard place to be and although I'm not there completely, I have had days where it is frustrating and my pain in my spine and my hip limit my mobility to the point where I'm not effective even though I look like a healthy 35 year old mom.  Then there are days when I feel fine and it's completely easy to want to and live in the land of denial.  I like that place.  I like being the caregiver, not really sure it's comfortable for me to receive the care.  When I am in denial, I feel like the MOM and WIFE that I am and the one that can give back all of the love and support that has been given to me.  It's the weirdest phenomenon. I have tremendous guilt I put on myself.  No one is putting it on me.  I just need to let it go, but it's hard.

     So hard to explain in real time what I need and even harder to put into words what I need in real time.  I'm working on it.  I do wish i could be more for Jeff and for my mom.  Back to the Body World Exhibit and being translucent, I was always amazed when I went to see it and saw all the body parts isolated from one another. Those parts were not living obviously, but how cool if we could walk around and alive and translucent.  lol  Ahh, the places my brain goes.  It was an amazing exhibit and with aches and pains that are un-identifiable, itches that come out of nowhere, moods that appear to be caused by nothing other than being a complicated woman (grin) my brain got to thinking.  If only our bodies were Translucent.  If only, if only that would be so cool don't you think?  People could then go up to me and I can see things on others and just get it without words.  Obviously unrealistic.  grin.  I think it's funny I want to be a Jelly person...It would explain a whole heck of a lot.

     This all goes along with the theme "Fine on the Outside, More Confusing and Complicated on the Inside".  I have this outer shell that to an outsider seems so incredibly normal, strong, and like the feisty 35 year old mom I have always been.  I want so badly for my insides to match.  I'm for the most part doing an amazing job at being honest and authentic with others and myself, but to those closest to me, well naturally they are the ones that see the breakdowns for what appears to be no reason, the frustration for the lack of stamina that I once had, and the confusion as to what the next day will bring.  All those feelings even though I am strong, those feelings do enter and I am human.  They especially come rushing in as new pain has developed in my left hip.  I go in Tom. (Monday) to my medical oncologist.  He still may want me to wait on treatment, but then again he may want me to start.  My last scans showed things were stable, but I wish they showed shrinkage.  My tumors are still there and this stuff once again is reminded to me that it is not going to go away without a fight.  Back in the ring with my fighting gloves on I go.  This whole ride has been a roller coaster of emotions good and bad.  I like when the good ones and the gifts show themselves of course.  Perspective does teach you a lot.

      The thing that frightens me the most is not knowing what my limitations will be.  I try to stay in the now and like all of us it's good to not think or live in the future.  We all know there are times when that is easier to put into practice.   I get sad sometimes thinking that this isn't the wife that Jeffrey thought he was getting or for that matter deserves. He has never ever made me feel this way (no one has), but if I'm being honest to the core, these are thoughts I think about when I see his stress levels rise. I feel so helpless.   I want to be the old Jen and trying to find that old spark in the new Jen body.  I know I have limitations and yes, it's true it is frustrating beyond belief.  I do hate that this monster is in our family and am incredibly determined to get it out.  This holds true for my mom and other family members as her and their  help in all this has been so wonderful.  I guess I am just apologizing to those closest to me that may get a reaction from me that doesn't seem to make sense.  I love you.

       My absence in writing hasn't been because of avoidance but rather longing for a sense of living and doing and being in the mix so badly that by the end of the day I have nothing left.  I want to be the one to get Z ready for school and take him.  I love it!  I want to take him to after school playdates and fun.  I love it and I want to just do.  I'm a product of my own mother that way.  It makes me feel good and so I have been doing as I'm still unsure when chemo will start and I will have to rely on others completely.  I do it now and, I LOVE IT.  At the end of the day, I'm wiped out.

      In terms of adjustment, Cancer right now feels like our second child that came home from the hospital.  Cancer pulls me away from Z and things unexpectedly.  Cancer wakes me up in the middle of the night.  Cancer causes Z (and daddy for that matter) to be confused as to where mommy's attention went as well.  It just is what it is and I am now starting to try and re-pave my path in realizing we don't know how long this Cancer thing will be with us and it is up to me to just live as fully and as happily as we can everyday and understand that as much as we want to change certain situations, there are many things that are out of our control.  I am also beginning to realize that our whole family will need prayers for stamina.  This could very well be our lives for a very long time if not forever.  All we have is today.  All this is my way of processing a VERY BIG thing.  I find peace in writing, thank you for listening and allowing me an audience to process this.

      We were able to make a trip up to Austin to see family over Labor Day Weekend which was nice, but at the same time I am different and that part frustrates me.  Hopefully I am different only temporaily.  The simplest of things can overwhelm me and it's not the actual thing, but more my brain in thinking about plans, wanting to be included and then realizing that my pain is too great and I may have to be out and rest and that makes me sad.  Even though family understands, Z doesn't always understand why mommy has to be out.  The weekend wasn't without an emotional breakdown.   This is usually stemmed from me getting overwhelmed and because of that conflict of me wanting to be in the mix and feeling normal and then managing pain that comes on unexpectedly and then needing to check out and fully rely on others.  This is hard on everyone and the truth is as positive and as strong as I am, there are days where I just want to say "Enough already you monster, I want you out!"

      I could be going along just fine and then BAM!  I'm not.  Ahh, this makes me go back to the desire to be translucent... This is my solution for the hour....TO BE JELLY.  Love you my friends and family.  Keep Believing, Keep Authenticity, Be True to yourself and your core and fight this fight with me.  We all will be dancing happily.  I'm incredibly grateful for the genuine people in my life.  <3....

     Dr. appt. is tom.  They only want to do bloodwork and a chest xray... Seems strange to me as I am going in for my hip pain, but prob. will be able to tell things in my blood that I don't get.  Keep those prayers coming.  I feel them everyday.  You make me stronger :-)

     I'm writing this on a day of true HEROS.  I will never forget 9-11 and remember exactly where I was when it happened.  Let's also take some time to remember those families.  What tremendous strength and determination they have shown.