2020 Update!!!!

I have been SOOOOO bad on updating this blog.  I am so sorry, but also, I just have nothing new to write about!  Steve went to MD Anderson for labs and scans in June and they were clear!! That makes SEVEN years clear!  Other than that, we really dont have too much new to blog about.  Our oldest daughter Sadie was a senior this past school year.  She missed out on lots of senior year traditions, but in the big picture, everything was still ok.  Steve saw her graduate!!  He wasnt even supposed to see her get out of middle school!  Life is good!!!  She is moving on to college in just a few weeks.  My momma heart is hurting, but I am so proud!

I still get so many messages from those that are
newly diagnosed and looking for inspiration.  If you are here and looking for inspiration, I am SO glad you found us!  Keep in mind that melanoma treatments are improving everyday, and try to keep a positive attitude! I KNOW that is so hard!  But try!  You can do it!

20 months NED!!!

I apologize to my blog followers for being such a crappy blogger lately!!! I haven't blogged in months!!  I have received messages on Facebook from readers wanting to know if everything was ok with Steve since I haven't blogged lately.  Everything is indeed good!  Steve is now 20 months NED!!  We have had so much going on in our family that it's been easier just to skip blogging. I keep my family and friends updated, but I know I have so many readers that don't use Facebook and/or aren't friends with me on Facebook. So, I do apologize! 

On May 13, 2015 Steve received the results from his latest scans....NED....No Evidence of Disease!!! Steve's doctor, Dr. Patrick Hwu (MD Anderson), has now suggested that Steve move to 6 month scans.  He is confident that Steve's melanoma will NOT come back, and in the event that it does, there are so many things they could treat him with now that they didn't have when he was diagnosed in 2012.  While this is extremely comforting to hear, we all know that the "black beast" can always come back.  We actually know several warriors that have went 2+ years being NED and then had the melanoma return.  But, we like to live life like melanoma is behind us.  While we will ALWAYS be melanoma advocates, we just want to LIVE!  We have been enjoying traveling, hanging out with friends and family, settling into our home that we bought last year, watching our 4 year old "graduate" Pre-K and just everyday "life" stuff.

As you may have read in my last blog, my older daughter, Sadie was diagnosed with mosaic Turner Syndrome in December of 2014.  All of her medical exams turned out great!  She has none of the problems (as of yet) that many Turner Syndrome patients have (heart, kidney, hearing, etc).  Sadie is 4'8" and will not grow any taller.  That is the average height of a girl/woman with Turner Syndrome.  We took Sadie to a reproductive endocrinologist regarding the fertility issues that Turner Syndrome causes.  Sadie's lab work showed her to be in pre-menopause (at age 13).  We quickly got her started on fertility medication for egg retrieval.  She has been through 2 cycles/retrievals.  Each retrieval yielded one mature egg able to be frozen for future use.  So, she currently has 2 frozen eggs and will likely start another cycle for another attempt sometime next month.  There is a 3 day Turner Syndrome convention in Kansas City later this summer that we are considering attending.  Being such a rare condition, we are hoping to meet some other girls her age that she can keep in touch with over the years.  

Please be patient with my lack of updates.  I will try to update more often, but they will likely just be updates on LIFE :)  Like I mentioned, we will ALWAYS be melanoma advocates.  I still advocate weekly (some may feel like it's daily) on my Facebook page, we have a walk supporting AIM at Melanoma coming up next week in Galveston (feel free to donate here), we are attending a melanoma symposium at MD Anderson in August, we have the AIM at Melanoma walk in Houston in September and I was recently contacted by a very large pharmaceutical company to work with them on some melanoma awareness campaigns.  So, we are still very busy with the melanoma world!!! 

P.S.

If any of my readers need to/want to contact me, you can always reach me through my Facebook page (there is a link in the sidebar).

Long time no blog?!?!

It's been a very busy last few months in the Martin household. Thankfully we have been living "normal" lives and have had no personal melanoma issues come up.  Unfortunately, several of our friends are struggling with melanoma.  This has been extremely hard for me to juggle.  While I am elated that Steve is doing well and continues to be "NED" (No Evidence of Disease), I can't help but weep for those that we have lost, are losing and are struggling.  Sometimes I find the easiest way to deal with the struggle of emotions is to just back away.  Then I realize that we have so much to offer (hope, knowledge, experience, etc.) that it is not really fair to back away.  I just have to find better ways to juggle my emotions.  

NED!!!

Here is a bit about what has been going on with us for the past 3 months.....

In May, Steven and I were invited by GSK (Glasko Smith Kline) to their Philadelphia headquarters to attend a Bloggers Summit along with a few of our melanoma blogging peers.  This was the first year for this event and I hope they continue it in the future.  I took great pleasure in the fact that "Big Pharma" wanted to talk to bloggers, patients, caregivers, melanoma foundations, etc. about our experiences and our thoughts on what they could do to help "us".  We talked in great detail with suggestions on what we felt was missing in the melanoma world in terms of awareness.  While Steve and I were there, we also did a short on camera interview that GSK will use in the future for melanoma awareness.  I feel like GSK will definitely do their part to help our community raise more awareness.  Which avenue will they choose to use?  I don't know and honestly it doesn't matter.  I applaud their efforts to help battle the beast!!

Steve and I outside GSK Philly offices

Mingling before lunch and the meeting

Melanoma Ribbon Cake

Blogger Summit Roll Call

Jamey Millar, VP GSK Oncology Business Unit

GSK Oncology Pledge

Group photo from the Bloggers Summit

The Bloggers Summit also gave us the unique opportunity to meet several of our melanoma peers in person for the first time.  These are many people that we have built relationships with over the last 2 1/2 years but have never been able to meet in person.  What an incredible experience!!! 

Meeting my dear friend, Martha for the first time!

Drinks with Steve, Martha and Rich

TJ, Martha, Rich, Melanoma Research Alliance, Melanoma Research Foundation

Dinner - Rich, Martha, TJ, Me and Steve

Me and TJ

Me and Rich

Me and Martha....sad to say goodbye :(

In June, Steve and I were invited to attend an event in Atlanta hosted my BMS (Bristol-Myers Squibb).  Another "Big Pharma" wanting to talk to the melanoma community to get ideas on awareness.  Big stuff!  Unfortunately, the event was to be held on the same date as Steve's 3 month results and we didn't want to reschedule all of his scans and appointments so we had to decline.  After learning that Steve is 9 months NED from Yervoy (who BMS is the developer of), they expressed interest in bringing us in in a few months to do some promotional videos for them/Yervoy.  We would love to do that, so hopefully we hear back from them.

Wednesday, June 25th, Steve and I headed to MD Anderson for his 3 month results (he had scans that prior Sunday).  We were so happy to hear he is still no evidence of disease!!!  Steve had 2 biopsies while he was there.  One on the back of his left arm and one on the right side of his upper back.  Steve got the call on Friday that both of these were clear of melanoma.  I believe they said one was atypical and the other was fine.  So, good news there too!  This was not our first time to meet Steve's new melanoma specialist, Dr. Patrick Hwu (he was on rounds several times while Steve was inpatient); however, this was our first time to meet with him in a regular clinical situation.  Dr. Hwu was just as kind, compassionate and amazing as we remembered.  Dr. Hwu seemed confident that Steve is a complete responder to Yervoy.  Dr. Hwu is very highly regarded in melanoma research.  He said that most people that are NED this long after completion of Yervoy go on to be NED for many, many, many years.  He discussed the future of Steve's appointments.  He would like to move from CT scans to PET scans.  He talked about moving to 4 month visits once Steve is 2 years NED, then 6 month appointments when he is 5 years NED and eventually moving to annual appointments.  While talking about all of these "future" accomplishments seems so surreal, the fact of the matter is, it COULD be our reality!  Dr. Hwu seems confident, and he is one of the most knowledgeable melanoma professionals.  So, his confidence gives me hope!  Dr. Hwu also went into great detail with Steve about keeping his immune system healthy.....meditation, more sleep, less drinking, exercising, better diet, less stress, etc.  Yervoy is immunotherapy.  It basically restarts your immune system to allow your immune system to fight the melanoma.  So, part of letting the Yervoy continue to work is by letting his immune system continue to work and be at it's best.  It's definitely a work in progress ;) 

Back of left arm

Upper right back

Arm biopsy

Back Biopsy

We will be back to see Dr. Hwu in September for the next 3 month scans.  I hope you don't hear from me until then :)  Although I do plan to try and blog more about melanoma awareness, issues, etc.

We got to meet up with Kathy, Judy and Ken while at MD Anderson.....love them!!!

Steve and I celebrating NED (after my Zumba class!)

 
Please pray, think positive thoughts, send your love, etc. to my dear friend Kara who is fighting for her life right now.  Also, do the same for my friend Brandi who is fighting to get tumors under control in order to get into a trial. 

My sweet friend, Kara and her family

 

My dear friend, Brandi and her family

***GSK reimbursed my travel and expenses to attend the GSK Melanoma Summit, however, I was not asked to promote GSK or its medicines.  This post is voluntary, represents my own views and I was not paid to write it.***

No Evidence of Disease!!!

I apologize to those who only follow through the blog, that I am just getting the latest update up.  Steve had his appointments at MD Anderson on Monday and scans all showed that he is NED (No Evidence of Disease) still!  We are both so thrilled!!!!

We stayed the weekend at The Rotary House that is attached to MD Anderson since Steve's appointments were so early Sunday and Monday morning.  After his appointments on Sunday, we relaxed in the room for a bit and then had crawfish for dinner at Sam's Boat.

The Rotary House

Being silly waiting for the car.

Monday, Steve had a full day.  Luckily the appointment with Dr. Kim was first, so we got the NED news right away.  It was a bittersweet appointment.  Dr. Kim is leaving MD Anderson and going to San Francisco to work.  This was our last visit with Dr. Kim.  We have been sooooo happy with Dr. Kim's care, his personality, his knowledge, just everything about him.  We are going to miss him so much!  Steve has now been assigned to Dr. Patrick Hwu.  Dr. Hwu is one of the top melanoma specialists in the world.  We are so happy to have gotten assigned to Dr. Hwu and have no doubts we will receive the same quality care we received from Dr. Kim. 

Busy Schedule

Steve and me with Dr. Kevin Kim

Steve and Dr. Kim

No news is good news.  I hope I don't have to update again until 3 months from now!!!

Tomororw is the big day......

Steve had a CT scan and an MRI today.  He will get the results tomorrow.  We goofed off last night and today after his scans.  It's a strange life we live.  We could be given the worse news ever tomorrow, or we could continue to live our lives with Steve NED (no evidence of disease).  The longer Steve is NED, the "easier" scans seem to be.....the less "scanxiety" there seems to be.  But, there really is no "tricking" ourselves.  We know that just because things have been going well doesn't mean they will continue in that direction.  It's a fine balance between optimism, realism and fantasy land.  But, until we are given other news, we choose optimism.  We are optimistic that the scans will come back ok and Steve will continue to be NED, but in reality we know that things can change in the blink of an eye.  Melanoma is so very aggressive.  So, we have to live in reality as well.

Being goofy.....

Being goofy......

Being goofy.....

Honestly, we have been thinking so little about Steve and thinking of so many around us.  In February we mourned the one year loss of our sweet friend, Jennifer.  My friends Melissa and Sylvia both lost their spouses within the last few weeks.  And, most recently, my friend Kara had surgery on a bleeding brain tumor.  It's been a tough, tough last few weeks in the melanoma community and honestly, that's where our minds have been.

We miss you, Jenn!!

Get well, Kara!!!!

Not only does Steve get scan results tomorrow, but we also say "goodbye" to his doctor, Dr. Kevin Kim.  Steve has been with Dr. Kim since 2012 (when he was diagnosed with stage 4 melanoma).  Dr. Kim and his staff have been amazing.  Dr. Kim is moving to California to practice there.  There will be many, many, many tears shed tomorrow!!!  Regardless of Steve's scan results, tomorrow is going to be a VERY, VERY hard day for us both.  Dr. Kim has been so very patient with me over the last two years.  He lets me ask as many questions as I would like.  (Even when the questions don't necessarily pertain to our situation, he let's me play the "what if" game.)  Steve was given
6-9 months to live when diagnosed.  Dr. Kim and his treatment recommendations have Steve with us today (NED at that!!) 26 months after diagnoses. Dr. Kim will be missed tremendously.

We will miss Dr. Kim more than words can express!!!!

Steve has an ultrasound and 3 Dr. appointments scheduled tomorrow.  I will update just as soon as we get results!  Thank you all for all of your support, prayers, thoughts, messages, texts, calls, etc.  We love you all! <3 <3 <3

NED #2 - WARNING GRAPHIC PHOTOS AND PICTURES IN THIS POST

Steve got the results back from the doctor today.  NED!!!!  We are so excited and relieved!  We are closing on our new house that we just had built on January 10th, I am going back to work sometime in January (after staying home for 2 1/2 years).  We have lots on our plate and NO time for melanoma!!

Before we met with the doctor, Steve had has 3 month dermatology check up.  Everything looked good overall, but there was one spot that looked worrisome to the derms. They did not like the "center clearing".  So, off it came via an 8mm punch.  The mole is on his right rib cage area. Here are some pics and video.

WARNING GRAPHIC PHOTOS AND VIDEO

Here is the VIDEO of the punch biopsy.

Waiting to see the derm

Small mole with "center clearing"

Administering Lidocaine

More Lidocaine

Numbed up

Steve's photos stored in the computer from last visit to compare to today's visit.

Starting the punch

Getting going

She had to stop and give more lidocaine because Steve could still feel it

Getting going again.

And it is gone!

Little mole with "center clearing" will be sent off to pathology.

Getting stitched up.

All stitched up.