MY Story; Tina’s Place

Tina5 logoA safe haven was created out of a heartbreaking tragedy. This is Tina’s story…

What type or stage of cancer did your loved one have?Tina1

Tina had a mole in the middle of her back. By the time they found it, it was stage 3 Melanoma.
 
What was the primary cancer treatment facility involved in your loved one’s care and what was your experience there?

Tina  worked with Dr. Hersh in Tuson for the largest part of her treatment. Tina was in the Cancer center for IL2 in Tuscon and they where amazing. The entire staff well-trained and the care was the best I’ve ever seen. Tina at first was very happy with Dr. Hersh than thought and found he didn’t seem to be keeping up with what was happening with the new Melanoma trials and treatments. So she started seeking other doctors. She became stage four in 2008 and then the Melanoma moved into her kidney and it had to be removed. They where not able to remove all the melanoma and she needed a miracle and then found a trial in Phoenix with Dr. Gordon for B-raf drug and decided to move there and give the new drugs a test. Dr. Gordon office was really good with Tina while she was doing well in the trial. But once she failed, so did he, leaving her with nothing until we pushed and placed her in the hospital.  Dr. Gordon was not totally present for her care. He failed to finish the journey but rather left her in the dust. When you are down everyone needs a doctor that stands Strong with them through the good and the bad. The hospital in Scottsdale Shea the nursing was top-notch “Kelly Hilcove” the best and most of the doctors where very kind and caring.
What organizations were the most helpful to you?

I didn’t know of any organizations that reached out to Tina through out her journey. Even though she blogged her entire journey. Today I read and hear about many organization helping Melanoma patients. Which I think Tina would have found very helpful and heart warming.

What would you say was the most impactful experience from the treatment of your loved one?

This question is the hardest of all to respond to. During Tina’s treatment watching her become more and more in touch with God was amazing and even that word doesn’t do it justice. The closer she came to going to heaven by this I mean the last few months. I watched a mom who was tied had her daughter on her hip more than not, slowly let that little girl go closer and closer to her daddy. This meant she fell farther and farther from her mommy loving arms. Tina was one brave mom and this mom shed many tears watching this take place. Tina never spoke of what she was doing; I just knew as a mom what she was doing. She was allowing her daughter to become detached from her and attached to her daddy even more everyday. I can’t imagine the pain Tina was going through as this took place right before her eye. But she was so full of the Holly Spirit that she almost smiled as she watched, knowing she was doing the right thing. Before Tina past she was able to see her daughter lean on her daddy and see that daddy had taken it on with open arms. Being by her side and she was never mad, at least with others about what hand she was dealt. Privately she shed many silent tears. Tears for what if I die, tears for I’m leaving my 7-year-old daughter without a mom, tears I’m only 38, tears she always said, God is taking me for a reason I only hope I made him proud while I was on earth. I said, “Proud” UN measurable! Heaven was her reward!
 
What would you most like people to know about your loved one?

That once she could breathe after hearing the words you have stage 3 Melanoma. Tina began to help others who had Melanoma and to try and prevent it from happening to anyone she knew or who would read her story on her blog www.paleskinisin.com. She mad a very private illness public. She served as a mentor to many who never met her in person but found refuge in her story and personal notes. Tina was very funny, hard worker, preschool teacher and a wonderful mother and wife. If she was your friend she had your back always. She was a great daughter and the older she got the more caring I saw her become. She spent time with family as often as she could.
What is your greatest source of strength and/or inspiration?

My heavenly father brought me my greatest strength without a doubt. He gave me strength to be my daughters care giver with some days only getting maybe four hours of sleep. To be able to Tina4 housecontinue the next day without being tired. I would never, ever take back the time God allowed me to spend with Tina during the end of her journey. It gave me time to speak with my daughter about things no mother should ever have to. There where many times we laughed together and times we cried together. Time I cheered her that after a month of not being able to get out of bed, we cheered as we watched her take her first steps again. Once she started walking nothing could hold her down. She walked every single day until she went to heaven, that’s how strong she was. Tina gave me more I feel than I gave her during those last few months. She was so strong and full of inspiration and the peace she had those last few days I just can’t explain. I personally feel God leads us before he takes us, which helps those of us left behind. We must be open to God’s gift or you will not receive it.  God was with me when I thought I couldn’t get out of bed after Tina went to heaven. He was with me all those times I cried out in private and my pillow was wet from my tears. I still cry often and miss her tons, but every tear makes me stronger. Tina’s Place is helping me heal and I am looking forward to reaching out to all the families Tina’s Place is able to host.
Tina’s Place was created in Tina’s memory. Tina’s Place will provide a lakefront 2-bedroom cottage getaway, nestled in the trees on an all sports private lake in Michigan for Melanoma stage 3 and 4 patients and their families. There will be no charge for accommodations; food/travel to the retreat is the responsibility of those attending. Visit us at www.facebook.com/tinasplacemi or email us at tinasplacemi@yahoo.com for more information or to apply.

Tina3 house
What is the best advice you can give to someone who thinks that skin cancer can’t happen to them?

I have continued Tina’s passion in Melanoma Awareness and I speak with people about the dangers and some still don’t get that they could be the next one who dies this hour. I explain to them that someone dies of Melanoma every hour of every day. I advise them on sunscreen and reapplying. Wearing hats, sunglasses, clothing with UV protection and No indoor tanning it is just not safe. Tina can not go back words in her life but she would say Never let yourself get a sun burn. Prior to getting pregnant get your skin checked, stories are coming out about woman finding out during their pregnancy that they have Melanoma. Treatment can not be done during pregnancy. Get your skin checked once a year. Most Melanoma can be prevented with regular check ups. Moles can be removed that are suspicious easily if found early right in the doctors office. If you wait you will find yourself in the operating room not only once but several times while fighting for your life. Your beautiful in your natural skin if you can just see yourself as I do. Pale Skin Is In.

Tina2 I wear black

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MY Story: Timna from Respect the Rays

Timna, creator of Respect the Rays Facebook and Twitter pages, is a two-time Melanoma survivor. She definitely approaches melanoma awareness in a non-sugar-coated kind of way. Her updates are always fresh and she even asks people with influence how they ‘respect the rays.’ Timna recently asked Australian pro surfer Owen Wright how he respects the rays, he responded with this: “A lot of my day is spent outdoors and in the ocean. I don’t go anywhere without my sunscreen. I rarely surf without a 30+ SPF.”

If this inspires you to respect the rays please leave a comment and let Timna know. I want to thank Timna for her time and for being open to share her story with us.

Here is how Timna came to Respect the Rays.

Q. What type or stage of cancer do you have?

A. I have had melanoma twice. The first (2008) was on the bottom of my right foot.  It was “un-stageble”, but it was ruled as a melanoma. I had a wide excision and a sentinel node biopsy. Pathology reports came back clean. My incision was left open because of the location (impossible to close on the bottom of foot), and it took 3 months for the area to fill in and heal. My second melanoma (2011) was on my right forearm. It was melanoma in situ which means it has not spread and has been caught early enough to be considered stage zero. (In this stage, intervention causes an almost 95 percent cure rate.)  Just this past week, I was diagnosed with Primary Acquired Melanosis of the eye, which is a possible pre-cancerous lesion. I will be having surgery to remove this in August.

Q. What was the primary cancer treatment facility involved in your care and what was your experience there?

A. I am followed by many doctors at this point. My surgical oncologist is at UNC in Chapel Hill. My dermatologist is at Duke in Durham, as well as my eye specialist. I have found everyone I have worked with at both facilities to be amazing, patient, open to my questions, empathetic in regards to my anxiety, and more! I love my doctors, their staff, and everyone I have met in this process. I feel very fortunate to be having such a positive experience. It’s truly amazing to feel cared for and understood!

Q. What would you say is the most impactful experience from your treatment?

A. I will never forget my first appointment with my surgical oncologist, when I told him I just wanted him to cut the skin off and let’s be done, and he raised his voice to me and said, “THIS IS SERIOUS!” with a face I will never forget! I had no idea that melanoma was a cancer beyond the skin, that it could spread to your liver, lungs, brain, that is fatal. I knew at that moment my life was about to change forever. And it did.

Q. What would you most like people to know about yourself?

A. As hard as it may be for people (teens in particular), please learn from the experience of US, melanoma survivors, rather than ignoring the facts and having to go through this extremely scary life-long experience. LEARN FROM ME! It is now my mission to educate teens about the dangers and truth about tanning. Respect the Rays was “born” out of a horrible situation, but I have decided to turn it into something positive in hopes of elevating awareness, educating minds, and in turn saving lives.

Q. What is your greatest source of strength and/or inspiration?

A. My children! I want to be here for a long time, to see them grow up and watch them blossom!

Q. Was tanning or sunbathing a significant factor in your developing melanoma?

A. I think so, yes. But I do think there is a genetic component involved. I did run around in the sun my whole childhood, unprotected. I grew up in southern California, on the beach. I continued to worship the sun into adulthood, and definitely had many burns in my lifetime.

Q. How did your diagnosis change your life?

A. WOW! Where to begin??? It has changed EVERYTHING…from my behavior in regards to the sun and sun safety to my appreciation for life and how important EACH day is! What I find very ironic is that in the face of fear, and I mean SERIOUS FEAR, I have actually lost many fears…watched them melt away. I have become much of a go-getter, seize the day, see-the-world kind of person. I always say, even in the worst situations like cancer, there are blessings.

MY Story; Rich from Hotel Melanoma

As you will read–everyone’s story is true and unique. Please take the time to learn more about Rich who battles Melanoma and Authors his personal blog, Hotel Melanoma. Thank you Rich for sharing!
Here is Rich’s story…
1. Was tanning or sunbathing a significant factor in the development of your melanoma?
I never set foot in a tanning bed, but outdoor sun exposure was probably a very significant factor.  I was a lifeguard as a teenager and tried to attain the blond surfer dude look, which was a really dumb idea for a freckled pale skinned kid of Celtic descent.  My primary tumor was on my lower side towards my back and that area got a whole lot of unprotected sun in those days.  As an adult, I continued to sit out around the pool and jogged without a shirt during the summer time.
2. How did you diagnosis change your life?
In so many ways for the better.  I was diagnosed in 2003 a couple of days after my 50th birthday, and I guess I needed a midlife slap up the side of my head to realize I’m not immortal and time is and always was of the essence.  Melanoma became the catalyst for me to change some things in my life that weren’t working and needed changing.  The two primary ones were my career and my faith.  I had become quite miserable in law practice, and the diagnosis led me to bail out– I just wasn’t going to spend what could be the last days of my life chained to a desk, dealing with lots of unpleasant people and performing tedious tasks.  On the faith front, melanoma led me to stop procrastinating and decide what I did and didn’t believe.  I ended up converting to the Roman Catholic Church after twenty years of thinking about joining up but never getting around to it.
3. Tell me why you chose your blog name? How long have you been blogging and why did you start?
I think the line from the Eagles’ “Hotel California”– you can check out any time you like but you can never leave– is a perfect metaphor for living with the later stages of melanoma.  Once you become a patient, you’ll always be a patient (unless you croak) and you’ll never be declared “cured”.  I struggle with that, like every other patient.  So, checking into and living at the Hotel Melanoma became a unifying theme of the blog.  I started the blog in March 2010, with a long post that was a journal I’d written over the course of the previous 2-3 years.  I’d shared the journal with a handful of fellow cancer survivors and received a lot of encouragement to publish it.  The idea of publishing my journal as a blog, and continuing to write, came from the encouragement of a development officer at the University of Colorado Foundation.  It was a really big leap for me to expose my soul to the world, but folks told me I had written a great story that ought to be shared.  And I finally worked up the courage to shed my privacy and share it.
4. Is there an inspirational quote or song that keeps you moving forward and gives you strength?
There’s no one quote or song that I could point to.  But as you can tell from the blog, I love classic rock music and lots of songs inspire me to adapt them for life at the Hotel Melanoma.  I suppose if I had to choose one rock anthem for living with melanoma, it’d be Tom Petty’s “I Won’t Back Down”.
5. What is the best advice you can give to someone who thinks that skin cancer can’t happen to them?
Melanoma, and every other brand of cancer for that matter, can indeed happen to you and if you’re lucky enough to get old cancer probably will enter your life sooner or later.  So don’t court disaster by taking excessive lifestyle risks, like tanning yourself into a leather saddle.  But you can’t live in fear either.  Don’t hide inside, just wear some clothes and a decent sunscreen so you don’t fry yourself like I did as a kid and younger adult.  Something IS going to kill you somehow, someday, but meanwhile your life is a precious gift from God that’s worth taking some reasonable measures to protect and prolong as best you can.  So I’m doing my best to be livin’ it up at the Hotel Melanoma!
Thanks, Rich
On a dark mountain highway, cool wind ‘stead of hair
Warm smell of new sunscreen, rising up through the air
Up ahead in the distance, I saw a hospital light
Lymph nodes grew heavy, prognosis grew dimmer
I had to stop for the fight.
There she stood in the doorway;
I heard the clinic bell
And I was thinking to myself
‘This could be heaven or this could be Hell’
Then she picked up a clipboard and she showed me the way
There were nurses down the corridor,
I thought I heard them say…
Welcome to the Hotel Melanoma
Such a lovely place (such a lovely place)
What a lovely case.
Plenty of meds at the Hotel Melanoma 
Any time of year (any time of year) you can find them here…
YouTube Acoustic Video Here