SCARS

Mom, Allison, and me.... proud I had hair! Spring 2011

As 2014 ends today I definitely ponder another year without cancer.

Melanoma is one that can return with no notice and people who have been diagnosed are not even given the prognosis of remission, we live with NED, No Evidence of Disease. This is very confusing to many people and I stick to language that is familiar to people, like remission.

I am 3 1/2 years NED.....and SO GRATEFUL.

Yet, my scars continue to remind me of my battle.

Even though I have my hair back, and my hips ;), I feel the scars all the time.Everyday I cover up my scars, & under my clothes is a hole under my left armpit.  The cancer had been a 16cm tumor, wrapped around my brachial plexus nerve.  It was HUGE. The 5 rounds biochemo killed it and it was a black, dead, ugly mass, that was removed in a 3 hour surgery in April 2011. The underarm has scars of the original lymph node biopsy done in 2000, with my first stage 1 melanoma.  My poor arm is saggy due to my lack of ability to really use it, as the surgery removed muscles and nerves. I was left with 2 JP drains as well.  I am blessed to actually be able to use my arm as I have a friend who lost an eye to melanoma!  LOST AN EYE!!!  I can hardly complain when I see her wonderful smile and feel her warmth and joy for life.  SHOUT OUT to Suzanne Lescure!!



Many of us carry these scars and will always experience fear at new pains in our bodies, feel our lymph nodes while showering, look at new spots and wonder how long they have been there.

I suppose I am grateful I "got out" of fighting cancer as well as I did. Most people do not know I was sick and cannot believe I almost died from "just skin cancer." I even had a coworker tell me she was reconsidering using sunscreen because of me.... ( that's right, she doesn't in using sunscreen.)

My caring bridge entry after finding out the cancer was gone:

Miracles

By Stephanie Bowen — May 12, 2011 6:32pm

     "No tumor in Nineteen lymph nodes", "No evidence of melanoma", "Importantly, no viable tumor cells are seen in any of these specimens."  Laboratory External Specimen Inquiry

This is the news I received today!! No evidence there is still cancer in my body!  Thank you Angels, Jesus, & Heavenly Father for the MIRACLES!  

I can plan on my return to my family!

Keep the HOPE!

love, Stephanie

Even though I have scars, I will move forward with HOPE & FAITH that even if it came back, I would beat it again.. 

Happy Holidays!!

Happy Holidays out there!  I have not posted in a couple months and with Christmas next week I have memories of Christmas 2010, when I was not sure if I would survive to see another holiday.

For those who do not know my story:  In short: In the fall of 2000 I had a clark's level 4 melanoma removed from my left forearm. It was followed by a lymph node biopsy. The result of that was GOOD, no cancer in my nodes. Life went on...... 10 years later, in the spring of 2010, I felt something under my left armpit. I put it out of my mind until breast cancer awareness month. That is when I really realized something was wrong. After weeks of tests to determine what was going on.... by late November of 2010 I FINALLY saw an oncologist who told me to go home, there was nothing that could be done.  IT WAS HORRIBLE.

At that time, I lived in a very isolated mountain town. My Mom and I headed towards southern California, praying that we would be led to someone around Christmas who had an option for treatment.

The MIRACLE of MIRACLES is a very good friend of mine in New York knew someone who knew someone on the board of the Melanoma Research Foundation. This connection got me an appointment on December 23rd, 2010 with Dr. Morton at the John Wayne Cancer Center. I had a tumor the size of a grapefruit under my left armpit and was in EXTREME PAIN.  This appointment led to test after test which indicated the cancer had spread and I needed a medical oncologist. My next visit was to the Angeles Clinic to see Dr. Hamid.  He told me, I will try to save your life Stephanie and if the shit hits the fan I will tell you. I was admitted in for bio-chemotherapy on Jan 5th, 2011.  I AM ALIVE!!

It was extremely painful and hard and I thought I was going to die at least 2-3 times during the treatment. My life has changed SO much since the cancer....my daughter suffered depression after the treatment....we lost our dream cabin in the mountains....BUT, I am alive!!!

With Christmas next week I will remember how BLESSED I am and even when I wonder WHY did I survive and so many others are gone, I will spread a message of HOPE & FAITH.

 My daughter & I at the start of my last treatment.

 My family, 1 year after cancer. 

My hubby & I in Glacier National Park, MT. 

Things you don't may not know about cancer survivorship....

Alright, it has been in my mind how healthy, non-cancer people do not really understand how those of us who have been through cancer feel after our treatments, when we are no longer in the trenches of active treatment. I write about this as I know I am in a stage where some people may wonder why I don't just "get over it" and move on.

What you don't know about a cancer survivor:
1) scars hurt - we have scars where our ports used to be and where we had surgeries. These are sore and cause a variety of problems. My surgery was so extreme due to the nature of the huge 16 cm tumor that had wrapped around the brachial plexus nerve, that when removed it caused permanent damage to my body. My left shoulder blade is constantly pulled out of whack.

2) we often head to an infusion center to have our ports flushed. A port is under the skin and needs to be accesses with a long needle and flushed with saline water so it does not get plugged. If it is plugged, the nurse needs to call your doctor and get a prescription for some unclogging medication to flush in to your body. Going tot an infusion center is stressful as it reminds us we are cancer patients.

3) Even if we do not lose our hair or it grows back, we can be sick. Cancer patients do not always look sick. Some of the new drugs do not cause hair loss... and even on steroids we can gain weight. So, well many of us look horribly skinny during extreme treatments , such as mine which was bio-chemotherapy.... many of us have hair while fighting.

4) Please do not tell us to "not worry" and "just think good thoughts" as we are already very worried and thinking good thoughts. Of course I worry about dying and leaving my family! Making light of that is simply, sometimes, irritating. Melanoma, for example has a 87-90% chance of reoccurence for stage IV patients. So, being worried is a part of the survival.

5) We are not contagious.... & we need HUGS.

6) Please know that chemo brain is REAL, and we may have a hard time remembering things.... and we may cry randomly, as there is PTS from fighting cancer.

Fighting for your life from any stage of  any cancer is very challenging to the human spirit. Our lives have changed and we are forever different.

Peace &Love to all those in the trenches of their fight, right now. May you feel peace and acceptance for the outcome of your fight. There were many days that I realized the outcome to my fight may have been death and I remember the times I almost died..  peace & love & comfort to those who have lost their loved ones.....  because CANCER really does SUCK.

#cancercanthaveme
#melanomaawareness

A kiss from Allison, I was finally back home after being gone for 6 months to fight cancer. 

Hubby & I a month after my surgery. June 2011

How Breast Cancer Awareness Month saved my LIFE...

Breast Cancer awareness month promotes and educates the public about the benefits of self breast exams. It was during one of these self exams that I found the lump in my left armpit which turned out to be stage IV melanoma.

First, I want to share that I have 3 very good friends who have had breast cancer. 2 of which are still with us, and one who passed on after battling breast cancer for 6 years. A diagnosis of breast cancer devastates. My friend who died was only 36. She and I were studying to be teachers together when she was diagnosed. Diane was a FIGHTER and did everything in her power to survive. Her passing broke my heart. My other two friends are alive and live with disfiguring mastectomies, reconstruction surgery and the same fears of reoccurrence that I live with.

Back to how it saved my life, Thanks to the awareness from breast cancer month & from having friends who have had breast cancer, I performed self exams monthly. This exam alerted me there was something growing in my left armpit.  With my history of melanoma I knew it was possibly melanoma again. I hoped for breast cancer because of the publicity it receives and how deadly I knew melanoma could be. If it was BACK, I did not know if I could beat it.....

SO, do I buy into all the pink???  no
Am I grateful that people are talking about cancer? yes
It is important that ALL cancers receive attention as those afflicted by cancer do not all get breast cancer.

We get melanoma, prostate cancer, ovarian cancer, uterine cancer, and lung cancer to name a few. The colors vary and frankly it is disgusting that so many companies try to profit off cancer by using pink ribbons.

I will be grateful to the awareness brought by breast cancer as it did saved my life.

Dear Melanoma

This week our melanoma community lost 1 more.  Those of us who have survived the unthinkable, the "go home and get your affairs in order," the HORRIBLE diagnosis of melanoma, often wonder, why me & not them???

That my friend is not up to us... that is up to God. Why am I here?  Why is she not here?  Brandi fought as brave as I did and longer. Brandi :

I did not meet Brandi or even communicate via all our wonderful technological ways of meeting people, but I knew her.  I knew her FIGHT all too well. I knew she was up against a BEAST. Melanoma is called a beast because it often does respond to traditional methods of treating cancer, ie. chemotherapy.  It does whatever it wants... 

Well.... F-You MELANOMA!! I HATE YOU!! I hate that this beautiful young woman and so many other people are dying because of you!! I hate that my insurance company doesn't seem to take it serious that I had stage IV melanoma only 3 1/2 years ago and won't allow my pet/scan.  I HATE CANCER.

That is all from my work today.... I wanted to put it out to the cyber world HOW FRUSTRATING it is that melanoma took someone else. I refuse to say she lost her battle... Brandi is in heaven and no longer has pain.  Bless HER FAMILY.  

More Angels in the ranks of heaven

This last week the melanoma community lost more of our warriors to the ugly disease that TOO many people call "just skin cancer." Tears flowed down my face and I went to work with red-red eyes.... When asked how I felt, I simply said...fine.


I did not feel fine. I felt heart broken, guilty, and ANGRY.  I felt heart broken for the young people who have lost their lives, fighting until the last breath.... Jillian, Adrienne, Michaela,  Elisa, Addison, Brianna, Tina, and SO MANY MORE!!!  TOO MANY YOUNG WOMAN!! Too many joing the ranks of angels.

Their families now live without them.  I wondered why did I survive a death sentence of stage IV metastatic melanoma?  How on earth did I survive 5 rounds of biochemo?? & WHY didn't these women also receive biochemo?? (It was HORRIBLE, but saved my life.)  

&  I FEEL PISSED OFF THEY ARE GONE.  PISSED OFF AT CANCER AND PISSED OFF AT TANNING AND THE MISUNDERSTANDINGS OF THIS PREVENTABLE DISEASE.

ok, BIG SIGH......AHHHHHH


That is why I tell people what happened to me.... so maybe they can also spread the word to someone who tans....so maybe someone who has NO HOPE can have hope..... so more people can get it through their thick skulls that melanoma is DEADLY and we need more awareness.  & maybe along the way my story helps someone.... so I bare my soul about the cancer experience I had.... & pray I do not have again.  & I pray for those who lost loved ones and for those who are fighting.... because melanoma is such a dark beast.

me, early 2011

me again, after 4 or 5 rounds of biochemo.... T

This is what  fighting"just skin cancer" looks like.  

My story:

http://www.amazon.com/Journey-With-Melanoma-Stephanie-Bowen-ebook/dp/B00AEIH9SO

( I do not share this for financial gain.... I share for  a need to spread awareness & HOPE..... )

ps, on a side note, I do know some people are sick and tired of my cancer story....don't care, I will continue to share a message of HOPE and spread awareness.

HUGS to ALL who happen upon my little blog. 

Steph

Dreams

Dreams filled my mind during the intense cancer treatment I received for stage IV melanoma. Dreams of skiing while getting MRIs of my brain......  Dreams of being with my family while hooked to the mother of all IV drip systems in the hospital..... Dreams of the future, without cancer.


YET, those of us affected by melanoma know that you never really say goodbye to melanoma completely. It is always lurking in your thoughts. The stats always tell a the story: 9% chance of surviving 5 years after diagnosis. WELL, F-You MELANOMA!!! I am still here!!!

OK, back to dreams: if you are a person who has been recently been diagnosed, know that others have been there!  Others have walked the road, filled with fear, heard the statistics of our survival chances.

 & WE ARE HERE!!


Dreams got me through the hardest of hard times.... AND they can help you too, ALWAYS HOLD ON TO YOUR DREAMS AND ALWAYS SURROUND YOURSELF WITH PEOPLE WHO LOVE YOU! When the times hit you and you think you cannot go on... dreams will pull you through. Dreams of NED, Dreams of your toes in the sand, dreams of whatever you LOVE doing!! & KNOW people are praying for you every day!!

"You're over the top about cancer...."

I just returned from a family reunion and had a GREAT time!  There were loads of cousins and nieces and nephews and aunts and uncles.... and lots of opportunities to spread awareness of being in the sun safely. I was very generous with my sunscreen, helping the little ones spread sunscreen on their backs, telling them to wait 10 minutes at least for the sunscreen to soak in.  I sat in the shade, wore my big hat and sunglasses.... not preaching, just trying to be an example.

When the family brought out loads of meat, I did not say a word..... I just cooked my veggies and ate with everyone.

YET, one family member went out of their way to tell my daughter that I was over the top about cancer.... and that it is genetic, a sunburn can't cause cancer.... and I am simple one of the millions of people who have had cancer.... or one of the hundreds.... (I don't know the exact words). The overall point seemed to be that I should get over it.

Well, I know I look good these days and I appear cancer free....& for all intent and purposes I am cancer free.

BUT. all us melanhomies know the stats for melanoma survival are not good. Here is some info from AIM:

Risk: Unfortunately, long-term survival is poor, with 1-year survival rates ranging from 41% to 59%. (1) - See more at: http://www.aimatmelanoma.org/en/aim-for-answers/stages-of-melanoma/stage-iv-melanoma.html#sthash.XgT8dRXd.dpuf

 

Large-scale studies indicate that the respective 1-, 2-, and 5 year survival rates for Stage IV melanoma are: (1)

Distant skin, soft tissue, and/or lymph nodes - 54%, 36%, 19%
Lung -       53%, 31%,  15%,
Visceral - 35%, 18%,    9%

- See more at: http://www.aimatmelanoma.org/en/aim-for-answers/stages-of-melanoma/stage-iv-melanoma.html#sthash.XgT8dRXd.dpuf

My diagnosis gave me a 9% survival rate to make it 5 years... and here I am 3 years out.

I will keep sharing a message of survival and HOPE if I get one person through a tough and scary diagnosis.... I will keep doing what I am doing, as of now I like being alive. & if I bug ya.... well....  that is too bad.

PEACE

 OUT!

Another Summer Hiding from the Sun

As I enter my 3rd year of NED, I know I can only look forward. I need to look forward and forget the painful moments of the last 3 years.  I need to let go of the pain  from almost dying from cancer & the turmoil it caused my family. The pain from losing our beloved cabin and leaving a place I loved....because the most important thing is I lived.

Whenever I see someone who is fighting cancer, I want to hug them and tell them I KNOW, I know the pain of the fight!! I know the fear of facing death. I KNOW these things intimately, yet I hold back and remember that I am alive and today is a day to enjoy and not dwell on the past.

Everyday I know there are people fighting the BEAST. There is Adrienne in Canada, fighting melanoma with all she has!! There is Michaela in LAs Vegas.... also fighting with all her soul. There are many more as my online support group grows every day.... and I HATE IT.

Today, I will hide from the sun, under my wide brim hat and under my sun shirt... I will slather on the sunscreen.  I will watch all the really TAN people and want to yell at the top of the LUNGS, "TANNING IS NOT HEALTHY!!"


Today I will hide from the sun and HONOR those who did not beat the beast, like Jilllian & Tina and the many others.  BECAUSE, I am a SURVIVOR. Bless those who are fighting any type of cancer.

Stop the MADNESS

Feeling Frustrated today... with the start of summer vacation for so many people, and the misunderstanding that so many people have about melanoma.... like it is "just skin cancer" and you can cut it out.

PEOPLE!!!!  REALLY???  Melanoma is the most dangerous skin cancer and is often fatal. The statistcs for survival have improved...but too many people are being told that there is nothing anyone can do for them.  Does this sound like something you can just cut out??

I want to share some information about melanoma, as seen at skincancer,org


http://www.skincancer.org/skin-cancer-information/melanoma

 "Both UVA and UVB rays are dangerous to the skin, and can induce skin cancer, including melanoma. Blistering sunburns in early childhood increase risk, but cumulative exposure also may be a factor. People who live in locations that have more sunlight — like Florida, Hawaii, and Australia — develop more skin cancers. Avoid using a tanning booth or tanning bed, since it increases your exposure to UV rays, raising your risk of developing melanoma and other skin cancers."

USE SUNSCREEN &  COVER UP this summer!!
DO NOT GET A BASE TAN.... it will not "help" or "prevent" sunburns.

#sunburns=melanoma

#beatingcancer4mydaughter

 

 

Melanoma is real, it is not FUNNY to sunburn.... WE NEED TO STOP the MADNESS.



Cast Away

This morning I was thinking about Tom Hanks in Cast Away. It made me think of cancer. I will tell you why.

When you are sick, and you are in the trenches of the fight. You often feel like Tom Hank's character in Cast Away. You feel you as though you are on a deserted island.... you are alone..... and there is no way out of the hell of the fight.

I want to add a quick disclaimer to say that this is not to be rude or dismissive to the MANY caregivers out there.... YOU ARE WHY WE FIGHT LIKE HELL!!! There are times in the night when a cancer patient has these feelings, at least I did.  WE LOVE OUR CAREGIVERS WITH ALL OUR HEARTS AND FOR ME IT WAS A REASON I DID NOT GIVE UP, EVEN WHEN THINGS WERE SO HARD!!

Back to my comparison......  just like Tom Hanks' character felt as though he would never see his family, as a cancer patient, I felt as though the "real" world was somewhere I would not see again. There were times when I felt as though my life had been altered forever.  Even after treatments ended, I felt sad and frightened by my fight with the beast. I was scarred.

Then one day, the trade winds started blowing.... and I knew I would make it. I knew there was a way off the island. AND here I am.... 3 years after and the warm trade winds are blowing.... I am LIVING. I am ALIVE & WELL.

FOR those who are in the trenches of the battle..... I AM HERE to share my story so you know there is another side of the battle... and that side is LIFE. WHILE I am 4ever changed from CANCER.... and I WILL 4ever share my story in hopes it provides HOPE!!

FOR the Warriors OUT THERE, Adrienne in Canada and KARA in New Orleans... and all the other BAD ASS Melanoma WARRIORS!!!  HANG IN THERE!!

& PLEASE WEAR SUNSCREEN PEOPLE!!

Peace, out, Love, Strong Steph

Birthdays

Just recently I turned 44. I did not know if I was going to make it to 41. When I was sick, the American Cancer Society began running ads with famous people singing Happy Birthday. It always made me cry.

There are more and more warriors who will not see anymore birthdays. Some of our youngest warriors have left us and are fighting right now.

Melanoma doesn't care how old you are. It is an evil from the depths of cancer hell. It is hell to beat it and as many of you know, you never really get over fighting it. It can come back and bite you in the ass!

I am 3 years NED and so grateful for that, but I am also aware of how everyday is a gift, a birthday gift for me is to be here and I do not want to waste my days on negative energy or people.

Go hug a tree!   GO ski a mountain!! GO ENJOY, for those who have left us!  PEACE!

Miracles

I want to send a HUGE hug out to those who are actively fighting melanoma. It was 3 years ago that I was completing my 3rd cycle of bio chemo. It was the most painful medical experience of my life. I was SO sick and would hardly eat for 10 days. At the time I did not know it had been 10 days without food. I was bald and skinny and weak. My goal during the treatments were to just be able to make it the bathroom on my own. That 6 foot walk from my bed to the bathroom was SO FAR. I tried to walk down the hall daily, but found this extremely difficult.

Yesterday I went cross county skiing  for an hour. What a difference a couple years makes!

My message this morning is for that it took me a while to get back to my old self. It is not easy to get through melanoma treatments and it HURTS. It hurts physically and mentally. Stats for the disease give me a 15% chance of surviving 5 years. That means there is a 85% chance of dying. WOW  I am here despite these odds, at about 2 years 8 months from my surgery.

If you are in the throws of the fight, know that others of us Have done this!!! WE are MIRACLES  and we are changing the statistics. WE ARE BEATING THE ODDS!!

Science and Melanoma

Yesterday I attended a workshop by the Melanoma Research Foundation in San Francisco and I learned so much!! I really feel it is important to stay in touch with the melanoma community so that if I were to need it, I would know what is out there for new treatment options.

The bottom line is that the new treatments are going to be more and more tailor made for each individual. Each person who receives a melanoma diagnosis can ask for their tumor to be genetically tested for mutations and then doctors can treat you based on the mutation. Just as the BRAFF mutation allows for a specific treatment, there are many more mutations of melanoma to be discovered and thus treated appropriately and HOPEFULLY more effectively.  This is why it is SO IMPORTANT for melanoma patients to see a melanoma specialist.

On a side note: it brought me great comfort to share my experience with others who have also been through biochemotherapy. This medieval treatment is still used on occasion and from what I learned, it is still unclear how it actually works..... melanoma is a tricky beast.

If you are reading this and you are fighting melanoma, please see a specialist. Please know there is more to your options than going home and calling hospice. Know that others have fought the fight and you are not ALONE.

PEACE, LOVE, and HOPE  are my fighting melanoma motto!!

Am defined by my cancer? Is cancer a "gift" ?

Now that I am an official member of the cancer survivor group I feel I can express my thoughts on the idea that many cancer patients hear, " Don't let your cancer define you!" & " the gift of cancer."

I try to do a lot of cancer support for others who have been diagnosed with the cancer. Just last week I heard of a young 33 year old Mom, who was diagnosed with stage IV melanoma....and her diagnosis was frighteningly similar to mine. An original diagnosis of stage I and 10 years later, a diagnosis of stage IV.

Melanoma is sneaky like that.....  ugggg.

Alright, back to my main idea: Does cancer define me? Should it? I hear so many times that us cancer patients should not allow our diagnosis to define us. I beg to differ.....


I am a stage IV melanoma patient. I am currently NED, and proud and relieved to say NED for 2 1/2 years NED. Am I my diagnosis? Well....yes I am!  Cancer hit my life like a ton of bricks and cancer will always be a part of my life. I will always be seen by a doctor to ensure I am NED. I will always spread awareness and hope to others facing a devastating diagnosis. 

I also want to address the idea of cancer being a "gift." What did I get from having cancer?  Sure, I appreciate life...I appreciate being alive and the time with my family and new experiences. BUT A GIFT?? No way! I would not wish anyone to go through the diagnosis of and the treatment of cancer. It scares you to your bones.

Contrary to cancer lingo out there, I do not see cancer as a gift and I do define myself as a cancer survivor. Cancer definitely changed who I am, both physically and mentally. I will continue to do my part, as a survivor, to bring awareness to people about melanoma being so much more than "just skin cancer."

It's okay with me if you define me as Stephanie who had cancer.... How do you feel about this?