Wednesday, July 2, 2014

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.***

Thursday, April 3, 2014

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!!!


Sunday, March 30, 2014

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

Sunday, March 16, 2014

6 months NED!!!!

Today is a bittersweet day for our family.  We found out this morning that one of our sweet melanoma friends lost her husband last night to melanoma after a long, hard battle.  Our melanoma family is a very tight knit community and every loss is like losing a family member....so heartbreaking. Today is also 6 months since Steve was given the news that he is NED.  Like I said, a bittersweet day, indeed.

Here is a picture of Melissa, Jeff and their precious babies....RIP Jeff.



Steve was diagnosed with Stage 4 metastatic melanoma in January of 2012.  At that time, he was given 6-9 months to live (this is the typical response from most doctors to melanoma patients when diagnosed).  Can you imagine at age 34 being told you were going to die?  Can you imagine at age 32 being told you are going to be a widow and single mom of 2?  I will never forget that day.  That moment.  After the general oncologist gave us the news, she walked out to give us some time alone.  We held each other and cried and cried and cried.  I spent at least a week crying.

After the initial shock wore off, I threw myself into melanoma research.  I read about melanoma, treatments, trials, read blogs, etc., every waking minute.  In February of 2012, Steve started a grueling round of biochemo at MD Anderson.  Following biochemo, Steve had a major, invasive surgery to remove an adrenal gland and large tumor that was attached to the adrenal gland and intertwined with the vena cava.  After recovering from surgery, Steve was treated with Zelboraf.  After experiencing debilitating side effects and being admitted to the hospital for 11 days with a mystery infection/illness, Steve was taken off of Zelboraf.  The next treatment Steve did was Yervoy (Ipilimumab).  Yervoy is 4 rounds of 90 minute infusions taken once every 3 weeks as outpatient.  Steve did very well on Yervoy.  He had little to no side effects.  And on September 16th, 2013 we got official word that Yervoy did it's job.  Steve is NED!



As we celebrate 6 months, NED, we have to be realistic to the fact that melanoma is a BEAST!  Melanoma can come back at any time.  We are thankful for the "normal" life we have been able to live the last 6-9 months.  During this time, we sold our home and built a new home.  We moved into our new home about 2 months ago.  We did not plan on building a new home for at least 5 more years, but we know we are on borrowed time and need to do anything and everything we want to do while we have the opportunity.



Steve's next scans are on March 30th with results the following day, March 31st.  We hope the results continue to show NED, but are always prepared to hear we need to fight again.  And if needed, that is exactly what we will do....fight again.  "Fall down 7 times, Stand up 8"


Sunday, January 12, 2014

MD Anderson Blog

Link to my latest blog for MD Anderson.....

Click here

Tuesday, January 7, 2014

Biopsy update

Just a quick update, the pathology from the biopsy Steve had at his last appointment came back clear.  No melanoma and not atypical.  Nothing further will need to be done.  Just another battle scar :)

Wear sunscreen.  Wear sunglasses.  Wear a hat.  Do monthly self exams.  See a dermatologist annually.  Don't use tanning beds.  LOVE THE SKIN YOU'RE IN!

Friday, January 3, 2014

2 year Cancerversary!!!

Last year I explained what a Cancerversary is to us and also recapped the first year of our battle.  You can read that blog here.

Today marks Steve's 2 year cancerversary.  2 years that "we" have been fighting the ugly black beast, melanoma.  I say "we" because it takes the whole family to fight it.  Steve does his part, which is by far the hardest.  I have my role as caretaker which ranges from changing bandages, arranging/rescheduling appointments, researching, making sure meds are refilled, etc.  Then there are our precious kiddos.  They play a huge role as well.  They are what makes Steve's fight worth it, they give him the drive he needs to continue fighting everyday.  Then there is our immediate family that helps us at a drop of a hat with anything we might possibly think of needing.  Last, and certainly not least, there is our ever growing melanoma family.  Wow!  What we wouldn't do without these folks.  Whether it is late night questions that need quick answers, rants that just need an ear, constant love and support, whatever the case may be they are ALWAYS there. 



Recapping this year is much easier than last year.  Last year was a real struggle for our family.  This year, Steve did remarkably well and we lived a pretty "normal" life.  In January, Steve had scans after 2 rounds of Yervoy (Ipilimumab).  These scans showed that his melanoma had shrank by about 50%.  Later in February, Steve finished his 4th and final round of Yervoy.  In March, Steve had scans again and they showed another 40-50% shrinkage in the melanoma.  Yervoy has a delayed reaction for many, so this was great news to us and very promising for future scans.  On that day in March, we also met our sweet friend Kara, and also met Eric and his wife Kerry who is battling melanoma.  That is my very favorite part of this journey....meeting our online melanoma friends in person.  Like I mentioned, they are all so special and such an important piece of this journey that meeting in person is amazing!



In June, Steve and I participated in The Art of Survivorship - 101 seminar at MD Anderson.  We both spoke to groups of cancer patients about our journey blogging and how it helps us.  I hope some of those patients went on to start blogs of their own.  Later in June, we put our house up for sale and it sold in FOUR days!  We are currently in an apartment and close on our newly built home on January 10th!!!  It was definitely a scary move to make.  Melanoma is very sneaky and to be honest we could never be sure Steve would live long enough to see the new home finished.  We close in one week.  I am beyond elated that Steve will be here to see the new home finished, live in the new home, enjoy the balcony together on the new home (something he has ALWAYS wanted).  June's CT scans also showed an additional 33% shrinkage of the melanoma.



On September 16th, 2013, we got the news we had been waiting for for over a year and a half.  NED!!  No Evidence of Metastatic Disease!!  What an amazing day that day was!!!  We KNOW that melanoma can come back at ANY time, but as a stage 4 melanoma patient, the best you can ever hope for is NED.......and there we were!  On December 31st, we received the same news again....NED! 



Steve will have his next scans March 30, 2014 with results on the 31st.  We hope that he stays NED but until then we will continue LIVING life!  We close on our house in 1 week, we are going to New Orleans to celebrate with friends this weekend (and hope that our Saints win their first playoff game of the season!!). 




Thank you all for being a part of our journey this past year and thank you to those who have been around to be a part of this journey the last TWO years!  I hope I have many, many, many more "cancerversary" blogs to write over the years.

Happy 2014 to all of you!!