Saturday, March 28, 2015

Yearly check...check!

8 months ago, I set up a dermatologist appt for my yearly check skin check and I will admit it- it has been more like 5 years. (Hanging my head in shame- I know, I know)

It wasn't that I was scared of was more about NOT being afraid. Melanoma is something I live with everyday but since the primary care I receive focuses on my eye care, I ignore the other parts of me.

One of the first things that impressed me about my dermatologist. ..he asked right away "Do you see a dentist who looks into your mouth often? Does your hairdresser check your head? See an OB yearly? Notice any darkening  places around your nail beds?" Oh my gosh...he gets it!! We quickly discussed all the other areas of our body that rarely sees the sun where melanoma  can be found...this doctor was on the ball before I even needed to say anything!

So the skin check was easy...he pointed out spots, lumps and bumps...described their melanoma risk level and what to watch for. Since I have very few actual moles, I have a low risk for melanoma overall but considering my family connection (my uncle passed away from melanoma) and my own personal history with ocular melanoma, we are still watching some spots.

I was asked if there was anything I was bothered by and there was. On my right shoulder, right next to my neck, ever since I was a young child, I have had 2 moles I nicknamed my "vampire bite". I have two more on my upper chest and as I have aged, all 4 grew in size, changed to a lighter shade of brown and became fleshy (was told this is normal) but then one changed in a way I didn't like.  It changed back flat, darker and irregular shaped. It bothered me enough I asked it to be looked at. The doctor suggested removing it considering my history so that is just what we did.

It was the first biopsy I have ever had but I wasn't concerned at with the process. It was painless and simple.

The hardest part was looking in the mirror and mourning the loss of my "vampire bite" I actually loved it there.  But as a fitness instructor, it was in a place on my shoulder that rubbed up against my sports bra and was often irritated so I am just thankful to have one less thing to worry about.

And appt for next year is already made :)

Wednesday, March 25, 2015

Taking on the big town!

Sydney and I ventured a trip to Washington a couple weeks ago...and by venture, what I really mean is, we took the city by storm.

Sydney is my little sidekick. The cuter counterpart who loves to travel and take on new adventures as much as I do...if not more... so when I suggested "Let's take a trip to Washinton, DC and attend Hill Day with Melanoma Research  Foundation", of course she said, " Why not..sounds like fun!"

So, emails sent, hotel and bus tickets book..a plan was enacted.  Hours later, we arrived in DC and one of my favorite places to be is in a train station. Union Station is no different. I have no idea why I love train stations so much but I have yet to be in one I dislike. Maybe it stems back to my 16 year old self, riding trains through Europe or the idea of just going somewhere's nestalgic.

And surprisingly so...DC, although it has many homeless, it feels safe. And clean. Even at 10pm.

Tourist moments aside, we were there on an agenda. To learn how to best advocate for more funding and focus upon melanoma research. We listened and learned about the judicial system, how laws become laws and get passed, how to speak ro our state legislative members & how to best be heard. We became empowered in our voice.

But the most important part for Sydney and I was connecting with Melanoma warriors and supporters in all sizes, shapes, ages and experiences.  We were amongst giants. We were amongst people individually making small efforts but collectively, making a big difference.  Most of all, as a mom, I watched a light ignite in Sydney. It wasn't long before Sydney had a 2 year old melanoma patient on her lap, snapping selfies. ( he is currently under chemotherapy treatment- one would never know)  We met Mason and Graham, Isaac and others...they all mattered.

We also met Suzanne, who in her own right, has an amazing story.  She is a stage 4 survivor- 6 years ago, had a mole removed from her hip with 5 years NED. Then a scan revealed tumors on her liver and lungs. They were removed or treated but after she collapsed at work, they discovered brain tumors. So 4 weeks before meeting her in DC, Suzanne had brain surgery. I was impressed by her calmness as she shared her story. I was awed at her beauty. She reminded me why this is such an important  mission.  She was alive because of current research and drug therapies.  I am alive because I had a doctor willing to try something brand new, a treatment  never attempted before. She and I were living proof we needed to keep getting the word out about melanoma awareness, research and press forward so others had equal access to good healthcare, treatment options and the best outcome possible!

So off we went to the Capital on a BEAUTIFUL spring day. It was marvelous.  The various offices we visited were receptive and willing to listen as we shared our stories, shared current melanoma materials and took a moment to just enjoy this time. was a life changing moment for Sydney and I. We will do it again. We made new friends. We grew deeper in appreciation for melanoma warriors. We felt confident in the suppprt we received from Melanoma Research Foundation.

Next year, we will do it again!

In the meantime, Sydney has now started her own blog. The girl continues to amaze me.

Sunday, March 22, 2015

A new start

Have you noticed I have been gone.  There is a reason for it.  I hit the ground 2 years ago with a clear vision~  I had a voice of being a cancer survivor~ a rare cancer~ and if I spoke, people would listen and maybe protect themselves.

Well, they did.  I was invited to share my blog with Melanoma Research foundation, invited to write about my experience on, connected with countless patients, parents, friends and loved ones who shared their cancer experiences.

Then something strange happened.  I wanted the attention to stop.  I was embarrassed to share my story- I felt exposed, vulnerable- like I was self indulging and self serving which was exactly opposite to what I had hoped to accomplish. I was embarrassed as I recognized my story was strangely unique.  I lived.  I never went through chemotherapy.  My cancer was contained, treated and I have been NED for nearly 10 years.  I was never "sick"- tired but if you know me...I recovered and was back to life in 3 weeks. How dare I feel I have a voice...I didn't feel entitled to be a "warrior"- there wasn't this warrior fight.  I was diagnosed, treated, moved on...

Guilt.  I felt guilt. Immense guilt. 

Last summer, I sat on my dad's porch and shared with him my experience. My dad has been my number one support and counselor so after almost a year of these feelings, I needed to share with someone who I trusted.  And finally expressing it helped me put into words I couldn't find for the emotions I was feeling...Survivor's guilt.  

Copied from
What is survivor guilt?
Survivor guilt is common among survivors of traumatic events—such as war, natural disasters, accidents, and even acute or longterm illnesses such as cancer. Survivor guilt refers to the sense of guilt or responsibility that can occur when one person survives a traumatic event that others did not. And, yes, cancer can be a traumatic event.
“Not all of our patients experience cancer as a traumatic event,” explains Rhonda Colley, MS, LPT, LMFT, a mind-body therapist at Cancer Treatment Centers of America® (CTCA) in Tulsa, Oklahoma. “But even if they aren’t traumatized, they can still experience survivor guilt, which means basically feeling guilty that they got through this treatment journey relatively unscathed.”
This may not make sense to someone who has not walked the cancer path, sat with fellow patients in the waiting room, compared diagnoses and treatment plans, and given and received encouragement throughout the journey. But to a cancer survivor, it makes perfect sense, and it is another part of the cancer journey that must be processed. what.  I have talked with other cancer patients and sure enough~  This is normal. I breathed a sigh of relief as I discovered they almost all felt it at one point or another.  It is just a part of the journey.  It was the part of the journey I was not prepared for so it took me over a year to understand but now that I understand it, it is time to bring about new focus.