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.