Ripple

My husband loves the Grateful Dead and listens to them often.  One of their songs that I love is Ripple. The following lyrics reminds me of battling cancer.

There is a road, no simple highway
Between the dawn and the dark of night
And if you go no one may follow
That path is for your steps alone

https://www.youtube.com/watch?v=671AgW9xSiA



Battling cancer is a family affair as entire families face doctors, hospital stays, side effects, and FEAR death. Yet, in the dark of night the patient is the one to face this fight.

I remember nights, when everyone was sleeping, if I woke up I would cry. I would cry for my family watching me fight. I would cry for the thought of leaving them.  The path of facing death was mine alone to face.  

I cannot tell you how much it meant to know I had so many people praying for me!  My family was a ROCK of support and I will ALWAYS be grateful to them.  

I pray for those laying in hospital beds now, laying in bed now, feeling so sick you don't know how your are going to get yourself to the bathroom. And you don't want to lose that one ability to walk yourself to the toilet..... you are tired of asking for help.... and you are tired of feeling so tired.

This is my shout out to you that while you feel the steps are for you alone you have people you have never met praying for you!  While you and your body are fighting and you do need to face the treatment physically alone.... you have an army of prayers coming your way!!  


THANKS to my Mom for always being there during the sleepless nights when I cried. I was never really alone. 

 

Listen to Ripple  =  Ripple

the 5th YEAR

2016 is officially the 5th year since I was diagnosed with stage IV metastatic melanoma. I had melanoma in my lungs, in my sacrum, and sub cutaneous tumors popping up on my abdomen. Plus the MONSTER 16 tumor under my left armpit, wrapped around the brachial plexus nerve.  I had an 85 chance of being here today.  And in May is when I was told the tumor activity had ceased. I was officially NED after a radical dissection to remove the dead tumor in May of 2011. Needless to say, I am very grateful to be HERE writing this blog.


It is amazing that so many treatments options have come out since then!  It is amazing that so many people are being declared NED!! I am beyond grateful.

YET, my heart is heavy with the losses in the melanoma community this year. My heart is heavy for those who are fighting with so much pain right now.

This year I am taking more steps to FIGHT melanoma. I am heading to Washington D.C. in March for the MRF and an AIM Walk in June. I am 1 person on a mission.

BRING AWARENESS & RAISE $$ to help the Organizations that Help SUPPORT a CURE for the BEAST!  WILL you join me in this mission??

MELANOMA, here I come!!

A Cancer Education

         When you enter the world of cancer you learn new vocabulary.  you learn words that end in      "-ine," like cisplatine and visplastin. You learn the difference between immunotherapy and chemotherapy.  You learn about radiation treatments and the difference between an MRI and a CAT scan and a PET scan.  You have nurses dress in hazmat gear to measure your urine. You learn about what your insurance plan will cover and what it will not.  AND what it will not are the extras.


Most of all, you learn that cancer does not care what time of year it is. Cancer does not care it is Thanksgiving and Christmas time. Cancer does not care it is your birthday or your child's birthday. Cancer does not care if you are pregnant.

Melanoma hit me full force in November of 2010. I am NED stage IV. Cancer did not care it was Christmas time, because by Christmas of 2010 I was legitimately dying of cancer. I had a doctor tell me to go home, there was nothing he could do, I had another say he'd try to save my life.

Cancer doesn't care about anything other than surviving and thriving in your body. Melanoma is often called the black beast because of its color after being removed. This beast is resistant to many treatments and the treatment I went through was NO GUARANTEE, yet I am HERE!
As I approach my cancerveyrsary I think of those who fight on through the holidays.  i think of the oncology wards of children and adults receiving cancer. I think of the infusion centers here people are hooked up to poison, hoping it will kill the  cancer. I pray for you all and paint my angels for you.

GET READY to RUMBLE!

2016 is right around the corner and it has been 4 years since my stage IV melanoma diagnosis. Thanksgiving of 2010 was the SCArieST ever thinking that it was my last holiday season with my family.

YET, that was not my fate. I found a doctor (Dr. Hamid) at the right place (the Angeles Clinic) and he saved my life with the experimental treatment that does not always work, biochemotherapy, and I lived.

Since then, I have found a new passion in my life, trying to spread cancer awareness. In 2016 I am putting my $$ where my mouth is and heading to Washington D.C. in March to advocate for the MRF. I am a simply mountain gal and heading to our capital scares me, but I am going in honor of those who have passed from the beast.

In June I am organizing a walk for AIM in Southern California.   I am nervous but know I will be blessed with a great committee of volunteers to help raise loads of $$ for melanoma awareness and research monies to find a CURE.

I believe I survived to make a difference and in 2016 I am going to do my part. I am one small person who survived as there are MANY of us out here!  I vow to speak up for those who cannot.

#melanomasucks
#morethanjustskincancer
#blessedtobealive

to borrow a hashtag from a fellow melahomie
#dontstopbelieving

YOU SHALL NOT PASS!!

 

As I sat in my hot tub this morning, hoping to see some "fire ball" meteors, of which I did not, I pondered how this is the anniversary of my diagnosis of stage IV melanoma.

If you haven't heard my story before:  Fall of 2010 I had a lump under my left armpit. By thanksgiving, it was about the size of a tennis ball. The doctors had these statements, " give her a shot for pneumonia, she's going to have chemo" & " why did you come here? I could've done this over the phone." "There's nothing I can do."

The shock and horror my family felt is indescribable. We cried and cursed ( well I cursed) and PRAYED for an answer. We reaching out to everyone we knew for help.  I friend of mine who knew someone who knew an important someone, Debra Black, was able to get me an appointment on December 24th, 2010 at the John Wayne Cancer Center.  After a LONG day of tests and scheduling surgery to remove the tumor that was now the size of a grapefruit and causing me unexplainable amount of pain, we received a phone call at around 8:00 that night. The tests said the cancer had spread to my lungs and surgery was out of the question. I was being referred to a medical oncologist named Dr. Omid Hamid at the Angeles Clinic. 

My husband and daughter left after Christmas. I stayed with my parents for the appointment to the Angeles Clinic.  The tumor grew.... and grew... and my hope for surviving went lower and lower....I was heart broken.

The first week of January I saw Dr. Hamid. He said, " I will try to save your life, and if the shit hits the fan, I will tell you. It hasn't hit the fan yet."  I was admitted to St. John's 3 days later for my first of 5 rounds of biochemotherapy and received around 2 years worth of chemotherapy and immunotherapy drugs in 5 cycles. I was bald, I was sick, and I hardly ate a thing. BUT the cancer shrunk and by the last cycle the scans showed no active cancer.  In April Dr. Morton performed a 3 1/2 hour surgery to remove the dead tumor. THE MONSTER under my arm was gone!  AND I still had an arm!  

I share to let you all know I have been there... I have suffered... and I SHARE HOPE that one day you can be back on your feet!  For those who have lost loved ones....during may darkest days of chemo there were times I did not want any more drugs. I did not want to suffer anymore. If the cancer had not responded, I would have called in hospice. I completely and totally understand those life and death decisions faced by cancer patients and their families.  My heart breaks whenever I read that patients are not responding to treatment. WHY ME and Not THEM?

For NOW, CANCER SHALL NOT PASS into me!  you asshole, you tried to take me from my family and I am coming at you in 2016! Now that I feel more human than ever ( as the treatments took about 4 years to feel really over. 

I head to Washington D.C. in March with MRF to advocate for government support of melanoma awareness!

In June 2016, I am planning a fundraising AIM walk/run to bring even more attention to the dangers of melanoma!  

I do not know where else I may end up...but MELANOMA!  YOUR DAYS are NUMBERED!!

diagnosed & parenthood

The other night my lovely 18 year old daughter came to see me before I fell asleep. She has been dealing with the new world of being a grown up and wanted to discuss some things. She looked at me and said, "what if you are not here?"

I paused....

"What do you mean? I am here!"

Then it hit me like a ton of bricks.

"Do you mean the cancer?" OF COURSE she meant the F-ing cancer!!

What if she needs me and I am not here to help.

Cancer is a horrible thing to face and even more horrible to tell the ones you love you are sick. I cried my eyes out for my daughter especially when I received the diagnosis


I did not want to leave my daughter but I had to and I lived down in southern cal for treatments and I did not know if I would ever return home.

My new melahomie Lisa Butler is fighting stage 4 melanoma with 3 small children at home.
My other new melahomie Aine is stage 4 and HER mother is as well!!

Telling my daughter I had cancer was the worst thing I have ever had to do. It is also why I fought so hard.

To all those mother's out there, keep fighting!

To Lisa, I am so proud every time I see you post your smiling face and I now this has not been easy for you.

To my daughter, I AM SO PROUD of you!!

Can't you cut it out?

Can't you cut it out? This is a question that people with melanoma hear a lot. It's just skin cancer, right?

SERIOUSLY!!!

I am sick and tired of hearing this. I know many people who have been diagnosed with stage IV melanoma and have not had  primary melanoma on their skin. I know people who were misdiagnosed with something else, because melanoma was the last thing on the minds of their doctor. I know someone who had it come back, INTERNALLY, after 10 years passed of it just being "cut out." (that is me by the way).  

SO, for the record, melanoma is the deadliest form of skin cancer, it is cancer, and people diagnosed with it will spend their entire life wondering if it is coming back. 

Too many people are losing their life to this ugly disease. Last night we lost a beautiful young man to the disease. I cannot imagine the sadness is family is going through. It is time for this disease to be hit with all we got!  It is time for all cancer research to join forces and fight for all cancers!  It's not all about the pink ribbon, it is about all cancers!

I am saddened and pissed off and out of words for the  losses due to cancer. ENOUGH IS ENOUGH. 

This country needs to get off its ass, and stop distracting us with bullshit political games and put our resources and energy towards GOOD, CURING CANCER needs to be TOP of the list.