Monday, December 31, 2012

Happy New Year!

I am spending the night with my family safe at home and just want to say to all of you...

I hope this new year brings good health and happiness to all of you!

P.S  Melanoma, we are coming after you!

Sunday, December 30, 2012

A Stage By Any Other Name....Is STILL Melanoma

When I was first diagnosed with melanoma, April 2011, I was told by my dermatologist and surgical oncologist that I was stage 2a.  I had to undergo a wide excision biopsy which left me with a 7 inch scar on my leg that looks like a shark bite.  I had a lymph node removal and was sent home to wait for results and recover.  It was the darkest time of my entire life.  I reached out on Facebookland and through the internet, I was led to several of my now friends.  They really helped me through the darkness and have been supportive and understanding.  I was told with stage 2a, that I was good to go, since my surgery got all the melanoma and the lymph nodes were clear, but I couldn't help but worry that melanoma was lurking somewhere inside of me, undetected, and was not going to be found until it was too late.  I have struggled with this so much, that in June I went to see a melanoma specialist at the University of Michigan for a second opinion.  They read my original slides, and told me I was not stage 2a, but stage 1b.  It was hard to adjust to.  Mostly because, I had also been struggling with the fact that some of my new friends where stage 3 and 4 and were going through horrendous treatments.  Some had passed away.  I felt like being a stage 1 or 2 was not significant.  I felt like I had no right to say I was a warrior.  I felt guilty.  I was going to a cancer support group and I met one of my dear friends there, that is fighting Stage 4 melanoma.  She has gone through hell and she does it with such dignity and strength.  I felt guilty that she was going through so much, when I was told I was done and clear.  I felt uncomfortable at the group since I was not going through a battle like they were.  I felt like I didn't belong.  I couldn't imagine going through what my stage 3 and 4 friends were going through, and I was scared to find out someday. 

Then one day, I realized that it was MY feeling that way and no one was saying that my journey was any less than anyone else's.  No one was telling me I was not worthy of being called a warrior.  I was accepted as a stage 1 WARRIOR by everyone.  We are all dealing with different stages of melanoma and I don't mean statistical stages, I mean different stages, just like in life.  We are all somewhere different in our journey, and we come together and support and love each other, even though most of us have not met before.  And would not be connected without melanoma.  We have a bond that is like family even though I may not talk to every one of my fellow warriors, I enjoy knowing how they are doing and being part of their lives. Supporting the ups and the downs.  Mourning losses, celebrating milestones, and sharing experiences, joy, sorrow, and tears.  Hugs and many prayers pass over cyberspace between us.  I personally, have felt nothing but support, until recently.

 I have never been so hurt and disappointed, since joining Facebook, as I was yesterday.  I was mourning the loss of my dear friend's daughter, who passed away, by spending time with my daughter out of the house away from Facebook.  I knew that I shouldn't spend the day crying, and instead I should grab every opportunity to spend time with my loved ones. But, I did cry. We went to see Les Miserables, and I cried a lot.  My daughter was next to me and I know how precious that is.  We had a great time together. When I got home, I went on Facebook, and that is when I saw this:

"Today I am going to tick people off...just because I can...and because I am angry because we lost "___" to Stage 4 Melanoma.  My heart goes out to people who have been diagnosed with Stage 3 and Stage 4 because they have a REAL battle on their hands.  People with Stage 1 or 2 have very good odds of living a NORMAL and long life.  I resent the fact they continue to draw attention to themselves while the real warriors are fighting for their lives.  I resent it when Stage 1 and Stage 2 people compare themselves to late stage warriors when they haven't had to FIGHT.  I had to get this off my heart."


I have a huge problem with this for so many reasons.  I believe in freedom of speech, and this was (purposely) put on her personal Facebook page and not on a group page for all melanoma warriors in the group to see it.  First of all, she started off by saying she is "going to tick people off...just because I can."  So she was upset by a fellow warrior passing away and decided to tick off people that love that young warrior, by cutting them down?  I am not only offended because of what stage I am, I am offended that she, as a supposed friend, doesn't care about anyone with Stage 1 or 2.  We didn't go through a REAL battle?  We aren't still going through a REAL battle? Hmm.

Second, we all know what each stage means, and we all want to be stage 0, 1 or even 2...and stay there!  But, we all know one loose cell and a stage 1 can become a stage 4 in a heartbeat  Does this mean that any one person is less important than another?  I agree that our stage 4 warriors are fighting for their lives and I HATE it. I understand that stage 3 warriors are in trials, hoping that they will become NED and never advance to stage 4.   I DON'T understand the resentment towards others because of what stage we may be.  I feel that hate like that is not good, ever.  We should be "stage-blind" when it comes to melanoma, because stage can change.  It is melanoma.  That alone is scary.    I thought this person was my friend, but then I find out that she looks at us all as a stage and that we are only considered warriors if we are a stage 3 or 4 in her eyes.   It is her opinion and unfortunately it has hurt a lot of hearts.  The comments that proceeded were many and they have since been deleted.  I tried hard not to let it get to me, but it did.

I think we all need to bond together, and especially at a time like this, remain positive and supportive.  Anything less is just destructive and hurtful.  We are all fighting the same beast.  It is laughing it's ass off because we are destroying each other with negativity.  We need to remember,we all have special things and special talents we bring to the melanoma table, and we ALL have times when we are frustrated and angry.  We may not always see eye to eye and we may decide not to like what someone says, just like a family.  But if we start destroying the family, what do we have left?

And I had to get THIS off MY heart.

Fly With The Angels Jillian

 Fly with the angels Jillian.  Your long battle is over and you are the victor!  You fought with dignity and bravery.  You will be greatly missed here on earth, and although I had never met you, I feel like I know you. Your story will continue to be told and it will save many lives.  You and your Momma have taught me that family is what is most important.  Even though I was extremely sad and angry about your passing, there was only one thing I wanted to do. I spent the day with my daughter,and I held her a little tighter.


Jillian's Motto

I promise I will work even harder to put an end to this black beast.  Your Momma and I have big plans for 2013!  Get ready melanoma!  You are going down!

And I know you will be right there with us <3

Monday, December 24, 2012

"Maybe Christmas...Perhaps...Means A Little Bit More"

The most important and treasured gifts are the ones that money can't buy.

                                   Making memories.  

It is easy to get caught up in gift buyingThe real gifts are things you already have.  Cherish your loved ones.  Hold them a little tighter.  

          "Every Who down in Who-ville, the tall and the small,
           Was singing! Without any presents at all!
           He HADN'T stopped Christmas from coming! IT CAME!
           Somehow or other, it came just the same!
          And the Grinch, with his Grinch-feet ice-cold in the snow, stood puzzling and puzzling:  
          "How could it be so? It came without ribbons! It came without tags!
            It came without packages, boxes, or bags!"
           And he puzzled and puzzled, till his puzzler was sore.
           Then the Grinch thought of something he hadn't before!
          "Maybe Christmas," he thought, "doesn't come from a store.
           Maybe Christmas… perhaps… means a little bit more." ~The Grinch

Wishing you all a very Merry Christmas and Happy New Year!!

Saturday, December 22, 2012

"Does This Look Like Skin Cancer?"

One of the questions I get asked the most since having basal cell and melanoma skin cancer, is "Does this look like skin cancer/melanoma?"  I always respond the same.  

" If you are worried about it, see a dermatologist and get it removed. "

I can't say this enough...if you have a questionable spot, a new spot, a bleeding spot, or ANYTHING that you THINK may not be normal growing on your skin, GO TO A DERMATOLOGIST ASAP!

 DERMATOLOGIST- A doctor who specializes in the diagnosis and treatment of skin disorders. 

I really don't mind people showing me their moles, freckles, pimples, (well maybe not pimples), but if you are going to show me, I am going to tell you to also show a dermatologist. I am NOT a dermatologist, and I know that if you are showing me your spot, then you are worried that you may have skin cancer.  Or melanoma.  If you weren't worried, then you wouldn't show me and want me to tell you if you have cancer.  GO see a dermatologist and DON'T wait.  Don't think you are being ridiculous, or wasting your time.  Don't forget about it and see what happens.  What happens isn't pretty.  Skin cancer is disfiguring.

If you don't know of a dermatologist, ask your doctor to refer you.  Or ask family,or friends who they use.  If you have moles, you should be seeing a dermatologist regularly to have skin checks on your moles to make sure there are no abnormal changes. You should do your own skin checks monthly as well.  Look for the ABCD's of skin cancer.

There are 3 Types of Skin Cancer and they fall into two groups:Non-melanoma and Melanoma.

Basal Cell Carcinoma

"Basal Cell Carcinoma is the most frequently occuring form of skin cancer.  BCCs are abnormal, uncontrolled growths or lesions that arise in the skin’s basal cells, which line the deepest layer of the epidermis (the outermost layer of the skin). BCCs often look like open sores, red patches, pink growths, shiny bumps, or scars. Usually caused by a combination of cumulative UV exposure and intense, occasional UV exposure, BCC can be highly disfiguring if allowed to grow, but almost never spreads (metastastasizes) beyond the original tumor site. Only in exceedingly rare cases can BCC spread to other parts of the body and become life-threatening.
There are an estimated 2.8 million cases of BCC diagnosed in the US each year. In fact, it is the most frequently occurring form of all cancers. More than one out of every three new cancers are skin cancers, and the vast majority are BCCs. It shouldn’t be taken lightly: this skin cancer can be disfiguring if not treated promptly. Are you at risk?" (Source

Squamous Cell Carcinoma 

"Squamous cell carcinoma (SCC) is an uncontrolled growth of abnormal cells arising in the squamous cells, which compose most of the skin’s upper layers (the epidermis). SCCs often look like scaly red patches, open sores, elevated growths with a central depression, or warts; they may crust or bleed. SCC is mainly caused by cumulative UV exposure over the course of a lifetime. It can become disfiguring and sometimes deadly if allowed to grow. An estimated 700,000 cases of SCC are diagnosed each year in the US, resulting in approximately 2,500 deaths.
SCCs may occur on all areas of the body including the mucous membranes and genitals, but are most common in areas frequently exposed to the sun, such as the rim of the ear, lower lip, face, bald scalp, neck, hands, arms and legs. Often the skin in these areas reveals telltale signs of sun damage, such as wrinkling, changes in pigmentation, and loss of elasticity." (Source


"The most dangerous form of skin cancer, these cancerous growths develop when unrepaired DNA damage to skin cells (most often caused by ultraviolet radiation from sunshine or tanning beds) triggers mutations (genetic defects) that lead the skin cells to multiply rapidly and form malignant tumors.  These tumors originate in the pigment-producing melanocytes in the basal layer of the epidermis. Melanomas often resemble moles; some develop from moles. The majority of melanomas are black or brown, but they can also be skin-colored, pink, red, purple, blue or white. Melanoma is caused mainly by intense, occasional UV exposure (frequently leading to sunburn), especially in those who are genetically predisposed to the disease. Melanoma kills an estimated 8,790 people in the US annually.
If melanoma is recognized and treated early, it is almost always curable, but if it is not, the cancer can advance and spread to other parts of the body, where it becomes hard to treat and can be fatal. While it is not the most common of the skin cancers, it causes the most deaths. The American Cancer Society estimates that at present, about 120,000 new cases of melanoma in the US are diagnosed in a year. In 2010, about 68,130 of these were invasive melanomas, with about 38,870 in males and 29,260 in women." (Source

 I know that there have been many people who have had something that a dermatologist has told them doesn't look like anything worrisome, and want to watch it, only to find out later on that it WAS something and that something was left to grow and now it is too late.  Not all skin cancer's LOOK or ACT like skin cancers!  If you question if it is cancer, get it biopsied.  Don't take no for an answer!  Don't wait and watch it and don't let a doctor tell you to just wait and watch it!  Doctors ARE human.  They don't know EVERYTHING and they make mistakes.  (Trust me on this.  I work with doctors!)  And remember, if you are scared to have something biopsied, it is better to catch it early.  The longer it is let go, the worse the scar, treatment and prognosis.  No one wants a scar, but a scar is MUCH better than being dead. So, put on your big girl, or big boy pants and GO GET IT CHECKED!!

That little annoying spot, MAY be nothing, but at least you will know and it will be caught early if it is skin cancer.  Trust me, you are NOT invincible.  You are not immune.  You have skin, therefore you CAN get skin cancer.  You can get melanoma and you can die from it.  If you are a tanner, please realize the major, REAL risk you are taking when you tan.

Unfortunately, it IS someone's reality.

Monday, December 3, 2012

How Different My Life Would Be...

I was thinking today about how different my life would be if I had never been diagnosed with melanoma.

                                                       It AMAZED me.

First of all, I would not have bought the camera I had wanted for as long as I can remember, and started my photography business.  I would still be wondering if I should do it.  Spending that much money for me as a single Mom was just not something that I ever could do.  Even if I had had the money, the guilt would have tore me apart.  By having melanoma, it made me reach out and pursue that dream of being a professional photographer. ( Along with my fiance's support!)  I love it more today than I did yesterday!  I am grateful that I can see the dream begin to take shape.  It is a lot of work, with my day job, but I love it and wouldn't stop for anything!  I am learning and growing as a photographer every day.

Second, I would not have met some of the most amazing and generous, warm and caring people, that I have the privilege of calling my friends.  Fellow warriors.  I have met some in person and some I just know via social media!  It is really awesome to actually meet someone in person and be able to give then a huge hug though!  I can't imagine not knowing each and every one of them today.  And I wouldn't if I had not been diagnosed with melanoma.  Some of them have become such big parts of my life.  That makes me kinda of sad.  I am grateful for each of these friendships.

The most important thing is that my fair skinned, 17 year old daughter, would have started tanning a year and a half ago and would possibly be the one with the huge scar and fear of dying from melanoma, instead of me.  Maybe she would have been stage 3, or stage 4.  Going through trials, chemo, radiation, surgeries.  It makes me sick to think that I was going to buy her a tanning package for her 16th birthday.  What a great present.  Thank God, not long afterward, I found my mole. Kind of ironic that my surgery was originally supposed to be scheduled on her 16th birthday. ( I made the surgeon wait a week!  There was no way I was going to have it on her big day!)  It could have been her.  She wanted to be just like me ever since she was little.  I was not setting a good example at all, but had no idea.  I am forever grateful that it was me. 

Having my daughter look up to me and tell me that she is proud of me for sharing my scar and my story, when she was calling me a sun Nazi a few months after my diagnosis when I caught her sunbathing....means the world to me.   I went on TV and told my story for everyone to hear, and I was not scared.  I did it to prevent other teens from tanning.  Every talk I have had with her about melanoma, I did to prevent her from tanning.  To make her understand how serious it is.  She didn't understand in the beginning at all.  She said I had over done it (tanning), and that it wasn't fair that she could never tan because I got melanoma.  I understood her frustration.  We had long talks.  I showed her pictures and I showed her my friends.  I told her about them.  I cried with her when one of my friends would get bad news, or pass away.  She gets it now.  It took time, but she gets it.  She has seen some of the worst melanoma can hand out.  I didn't sugar coat anything.  I know she has told her friends, and they don't tan.  I know that she will never allow her own children to tan.  I have become a better mother because of my melanoma.  I have started setting a good example and it will be passed down through generations.  Because of MY melanoma, I have educated others, my daughter included, against the dangers of tanning and melanoma.

I also would not know as much about myself as I do now.  I would not know how strong I am.  I would not know how important each and every day is.  I would not appreciate everything I have.  I would not know how wonderful my life is.  I know it seems weird, but I am grateful for the journey.  I am grateful for all that I have gained and been able to take from this horrible experience.  I have not let my melanoma define me.  I have defined my melanoma.

So in a way I am glad that I had this experience.  It has changed me for the better in a lot of ways.  I almost let it destroy me.  I made the choice to use my story for good.

If I had never gotten melanoma, I don't really know what I would be doing right now, but I think having it has made me live rather than just exist. 

I still have my moments, and I get really scared about my future. I get freaked out about a new looking spot, or a new symptom that I am sure means my melanoma is still there.  I am learning to live with all of that.  Melanoma may have taken away my immortality, but it can't take away my story. 

And I will tell it.  Over.  And over.  And over.