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.***

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"

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!!

Official results are in.......

I often tell Steve that I have more anxiety waiting for the official scan reports to come in rather than getting the initial scan results back from Dr. Kim.  Dr. Kim usually has only looked over the scans himself and maybe listened to some dictated notes, but the official report is never ready.  This time around was no different.  I have spent the last 8 days checking Steve's online portal (multiple times a day) for his official scan results.  Today, finally, the reports were in.  As always, there is information in the reports that is confusing and we will need to speak with Dr. Kim about and possibly see some different specialists about.

The great news is that it is confirmed that there is no new melanoma, the lung nodule decreased in size about 33% (from 3mm to 2mm), and the clavicular lymph node shrank by about 25% (from 16mm X 16mm to 12 mm X 13mm).  We hope that when we return in September the Yervoy has shrank the tumors even more!

The oddball things on his official reports:

1. There is some cortical thinning in the lower pole of the left kidney.
2. Calcified granuloma is noted on the right. There is coronary artery calcification. 
3. There is some hyperattenuation within the secretions in the frontal sinuses and this may be related to inspissated secretions versus fungal sinusitis.

These things are clearly stated as having nothing to do with disease progression.  The thinning of the lower pole of the left kidney could be due to treatment, but at the same time his kidney functions are fine at this time.  From the little I have read online, as long as kidney function is ok, this is not a problem.  But, I may schedule Steve an appointment with a kidney doctor anyhow.  The calcified granuloma (again, I read very little) does not seem like a big problem, but probably deserves to be checked out more. The issues regarding sinus' and secretions we aren't worried about at all as Steve was sick with a sinus infection or bronchitis when he had his scans. He is cleared up and feeling fine in the sinus'.

Overall, really good news, we will just need to address a couple of issues to make sure he is not in any danger of any kidney, heart, or lung problems. 

I have been invited to participate in a Google+ OnAir Interview regarding melanoma, Steve's treatment, my blog, etc.  I have my first phone call regarding the interview on Friday.  It will probably take a few weeks to get the interview lined up, recorded, edited, etc.  I will post as soon as I have a link!  

Father's Day weekend and our youngest daughter's 3rd birthday!

We'll take it!

Today Steve had a head and neck CT scan at 8:30 am.  In order for us to get to MD Anderson by 8:30 am, we had to have the kids to daycare by 7:30 am.  So, needless to say, our morning started very early.  The CT scan went relatively smoothly with not too much of a wait. 

After the CT scan, we grabbed a quick snack to hold us over until lunch.  Steve can not eat before his CT scans, so he is usually starving by the time they are finished.  His appointment with Dr. Kim to go over results was scheduled for 11:15.  When we arrived to the clinic area, the status board showed that Dr. Kim was running 30-60 minutes late.  This is not unusual.  Dr. Kim is amazing and spends lots of quality time with his patients, so we never mind the wait.  I was very sleepy and actually fell asleep in the waiting room for about 30 minutes or so.  I never do that!!!  (Hope I wasn't snoring!!)  We finally got into a room about 1:15.  Steve's nurse came in and told us that the reports had not been written up yet so she was not sure of results yet.  After a little more waiting, Urvi, the PA came in and told us that everything looked great.  The official CT reports were not in yet but she listened to the dictation and Dr. Kim looked at the scans and A) they didn't see anything new and B) the lymph node and lung nodule had both shrank a little more.  This is great news!  While Steve is still not NED (No Evidence of Disease), it seems that the Yervoy (Ipilimumab) is still doing it's job.  Dr. Kim says that about 10% of Yervoy patients have a long durable response.  Maybe Steve will be in this category?!

Urvi taking a listen to Steve's heart and lungs.

After speaking with Dr. Kim, we left the hospital around 2:30 pm.  We grabbed a quick lunch at Ruggles Green.  I have been trying to eat gluten free and they have an amazing gluten free menu!  By about 3:30 we were on our way to pick up the kids.  Steve fell asleep in the car.  I had a few errands to run and he slept through all of them.  When we got home, he went straight to bed and slept till a little after 7:00pm.  Scan days/result days are always long and exhausting.  Add in the fact that we have been moving for a week straight and you have a couple of very exhausted people! 

Yummy gluten free pizza and the manager came over and gave us a free gluten free brownie with ice cream....yum!!

 

 

 

Dr. Kim is scheduling Steve to come back in 3 months for scans again.  The next set of scans will also include an MRI of the brain.  Melanoma is sneaky and likes to travel to the brain, so we have to be sure to stay on top of that as well.  Ironically, Steve does not see a dermatologist.  Steve has an "unknown" primary meaning he basically just woke up one day with Stage 4 melanoma.  They have never been able to find a mole that they think the melanoma originated from.  On his next visit, he will also start seeing a dermatologist.  Hopefully the dermatologist with map his moles so we can keep a good eye on them.  He has wayyyyy too many for me to keep up with (although I try!).

I hope to not have anything to update the blog with regarding Steve's treatments/scans/etc for the next few months.  However, I will try to post some news articles, advocacy information, etc. 

Thank you to everyone for your love and support!

The Art of Survivorship - Blogging 101

Steven and I were honored to participate in 'The Art of Survivorship' today at MD Anderson.  This was an all day "expressive art" seminar by MD Anderson in conjunction with Survivor Week.  Steve and I spoke on the panel for 'Blogging 101'.  There were about 75 people that attended the seminar.  The group of 75 was split into 3 groups - Origami, Exercise, and Blogging 101.  The groups rotated through each class.  Each session was about 55 minutes.  The moderator of our group introduced Steve, me and Dr. Oliver Bogler.  Dr. Bogler is a Professor in the Neurosurgery Department at MD Anderson and is also a blogger.  Dr. Bogler blogs about his recent (September 2012) diagnoses of male breast cancer.   For each session, I spent about 15 minutes talking to the groups about blogging, about why I blog, how to create a blog, etc.  Steve of course was my computer guru and pulled up my blog as I spoke and showed the stats (audience, views, traffic sources, etc.).  Then Dr. Bogler spent about 15 minutes discussing his blog and his story, etc., and then we opened the floor to questions for a short Q&A session. 

It was a great day.  I thoroughly enjoyed speaking with and meeting so many amazing people.  From the volunteers, the communications department employees,  the courageous cancer survivors and their caregivers, everyone had something to offer.  Kudos to MD Anderson for a successful, fulfilling day!! 

Tomorrow Steve has his 3 month scans of his abdomen and Monday scans of his neck.  We are hoping that the Yervoy (Ipilimumab) has continued to work and his tumors are either stable or have gotten even smaller, or better yet...ARE GONE!!!  I will keep you all posted!

Results are in......

I apologize to those who keep up with results and information through the blog only that I am just getting around to updating.  It has been a busy last week with appointments and Spring Break.  Wednesday 3/13/13 Steve had to be at MD Anderson at 7:30 am for a CT scan of his neck.  The CT of his abdominal area does not go that high, so they specifically scan his neck separately in order to get a clear view of his lymph node in his neck.  After the CT scan we had a little time to kill before his MRI appointment.  We went and had breakfast at House of Pies. (Pies yummy, breakfast....meh) After breakfast we headed over to Starbucks or some coffee and so Steve could try and work a little before his next appointment.  After about an hour at Starbucks we made our way back to the hospital.  Steve had his MRI and we were on our way.

Thursday, 3/14/13, we headed back to MD Anderson at 7:30 am.  Steve had an abdominal CT scan this day.  This one takes longer than the neck because he has to drink the barium drink and wait an hour to start the scan.  He doesnt have to drink the barium drink with the neck CT, they just inject him only.  While Steve was getting his abdominal CT scan, I headed downstairs to meet up with a friend, Kara (and her mom, Beverly) who I had recently met online through this blog.  She was recently diagnosed with Stage IV melanoma and is set to start treatment in the next week or so.  Kara is super sweet and I can tell we would be great friends!!  Did I mention she is from New Orleans?  Did I mention she is a Saints fan?  I see a friendship in the works here! 

After Kara got called back for her appointment, I headed back upstairs to wait for Steve.  He finished around 10:30.  We went upstairs to check to see if Dr. Kim was on time or not because Steve (and me for support) were fasting and needed to get some breakfast.  Our appointment was scheduled for 11:00 and it showed Dr. Kim was running 30 minutes behind.  We walked over to The Rotary House and had a nice breakfast at The Oaks restaurant.  While we were waiting on breakfast we got a call from our realtor.  We had recently put our land up for sale and she was calling us with an offer.  After a quick negotiation, we accepted an offer and are set to close on the 25th of this month.  Yay! 

After breakfast, we headed back over to wait for our appointment with Dr. Kim.  By this time he was running an hour and a half behind.  We were able to sit in the waiting room and visit with another couple that I also was connected with through my blog.  "E" and his wife "K" were also waiting to see Dr. Kim.  "K" is recently stage IV diagnosed also.  She is getting opinions from several hospitals/doctors and trying to decide which treatment route she wants to take.  Great couple and very fun.  Oh yeah, they are from Vegas.  Hmmm, another good match for friends for us :)

We finally got in to see Dr. Kim (I never, ever, complain about the wait.  Dr. Kim and his staff do NOT rush and answer all of my 50 million questions that I manage to come up with, so I am sure it is people like me making him behind :) )  We were hoping to hear that Steve was "NED" (no evidence of disease).  However we did not.  BUT, it is still great news.  Steve still had no new disease and his current diseased areas had shrank by another 40%-50%.  Also, another thing we have to keep in mind is that Yervoy continues to work even after you stop it.  Most people are scanned 4-5 weeks after the last infusion for that reason.  Steve was scanned only 3 weeks after the last infusion.  So, it is possible that had we of waited 4 or 5 we would have seen even more shrinkage. 

The "plan" from Dr. Kim is for Steve to come back in 3 months for scans.  While this may be the route we take, we are also looking to try and get into an anti PD1 trial.  This is a new drug that has had some really great results.  The results are usually long term and sometimes complete responses.  It is very hard to get into these trials for many reasons.  But the main reason is that they require you to have failed a treatment.  Steve has not really failed any of his prior treatments.  So, it will be difficult, but I will be focusing a lot of attention next week on calling doctors/hospitals to try and find a spot for him.  The Anti-PD1 has shown even greater response when paired with Yervoy.  If we could get into one of these trials ASAP it has the potential to work some real magic! 

If we are unable to get into the trial, we will have to sit and watch scans every 3 months and decide if that is the route we want to take and/or if we want to look into another trial/treatment.  Lots of big decisions coming our way.  BUT, Steve is doing great and tumors are looking good.  We just don't want ANY tumors!

4th Ipi Infusion COMPLETE!

Steve had his 4th and final Ipi (Yervoy) infusion today!!  Yay!!!

Before the infusion, Steve had an appointment with his doctor (Dr. Kim).  It was pretty short and sweet.  The doctor felt Steve's neck and also was unable to find the lymph node that we could previously easily find.  Dr. Kim seemed pretty confident overall in how Steve's treatment is progressing.  He gave us the choice to wait 3, 4 or 5 weeks for scans.  Even though waiting is nerve racking, I kind of wanted to wait 5 weeks because some of the effects of Yervoy are delayed.  Dr. Kim said to just go ahead and come in 3 weeks.  So, we will see how everything looks in 3 weeks.

When we get the results in 3 weeks we will know more of "What's next?".  If the scans come back with no new disease and/or things are stable and/or gone, Dr. Kim's plan would be to come every 3 months for scans.  I am not so sure this will be OUR plan though (shhhh, I haven't told Steve yet!).  There are a few trials that are maintenance programs for Stage 4 NED (no evidence of disease) or Stage 4 stable patients.  I may look into one of those depending if they say he is NED or just stable.  I don't expect scans to show any new disease since the last scans a few weeks ago showed no new disease and current disease had shrank by @ 50%.  But one thing I have learned.....don't "expect" anything from melanoma except for it to take you by surprise!!!  So, new disease is always a possibility unfortunately.  That's why I don't really like the "sit and wait" approach.  Maybe with NED, but not with "stable".  To me "stable" means that we need to keep fighting till we hear NED!!

Anyhow, I'm super tired and heading off to sleep!  Here are a few pictures I snapped today....

This is how we pass our time while we wait.

 More waiting!! Planning on wrapping the room next time.......kidding D!

 Ipilimumab is HERE - 4th and final!

 Getting his drugs and playing on the Ipad

 All finished up.....ready to eat!

 Ooops, we forgot the before picture.....we were starving!!!  Ahi Tuna appetizer

 Fish taco and cajun chips

French Dip and a salad

Yippie for Ipi!!

Yesterday and today Steve had CT scans.  Yesterday of his abdominal/pelvic region and today of his neck.  He was not scheduled to have scans until 3-4 weeks after his last Yervoy (Ipilimumab aka Ipi).
We were taken a little off guard when we looked at his schedule and saw that he had scans on his appointment list for this week.  I spoke with the nurse and PA who both agreed it must be a mistake because when on Ipi scans are not done till 3-4 weeks after the last infusion.  They were going to cancel the scans but of course double checked with the doctor first.  The doctor did indeed want the scans done.  I was very confused and worried as to why he wanted these middle of treatment scans when that is not protocol.  As a matter of fact, I could not find one person who had completed Ipi that had middle of treatment scans. 

Steve waiting to get called back for his scans

We saw the doctor this afternoon and we asked why the scans?  He said since Steve's body acted so crazy back in November, he just wanted to be sure that the Ipi was working and that melanoma wasn't sitting there spreading like wildfire.  Yay for a caring doctor that worries about these types of things even though it is not standard protocol. 

The results?  Great!  The clavicular lymph node has shrunk by about 50% (or more - the final report was not ready) and also the few lung nodules he has shrank by 50% or more also!  And BEST of all, NO NEW DISEASE!!!  Yippie for Ipi :)  I stole that from someone and I don't know who.  But I like the sound of it! 

Dinner after results and before 3rd round of Ipi

Steve has his 3rd infusion of Ipi tonight.  We are currently in the waiting room waiting to be called back.  In 3 more weeks he will have the final infusion and then 3-4 weeks after that he will have more scans to see the end result of the Ipi treatment.  I say 50% complete with treatment and tumors are 50% smaller, well that must mean that after the other 50% of treatment the tumors will be gone!!!  (Yes, I know that is not how it works, but that is the plan!!)

Despite Steve's great news today, we have had a very depressing day.  Back in September, Steven and I were invited to attend the Moon Shots announcement at MD Anderson.  We met Brian Rose and his wife, Lupe.  Steve was instantly inspired by Brian.  Brian had the most positive outlook, they were about the same age, and Brian was fighting this disease head on.  When Steve was in the hospital having some problems, Lupe would message me on Facebook to check on me.  They were both just very inspiring to us both.  This morning, Brian Rose passed away.  We were sitting in the lobby waiting for Steve to get called back for his CT scan when we saw the news on Facebook.  I was stunned.  I pointed to the computer and we were both just silent.  Both of our eyes instantly filled with tears.  We have both battled the tears all day.  RIP Brian.   

1 year Cancerversary!!

What is a "cancerversary"?  It means so many different things for so many different people.  Some people use it as the anniversary of hearing the words every warrior wants to hear "NO EVIDENCE OF DISEASE" (NED), some people use it as the anniversary of hearing the words no one wants to hear "You have cancer", some people use surgery dates, it is a little different for everyone.

Well, today is Steve's "CANCERVERSARY"!!  One year ago today, Steve had a fine needle biopsy that later confirmed metastatic melanoma.  Later it was confirmed even further that it was Stage IV melanoma.  Survival rates for Stage IV melanoma are grim.  Many reports state less than one year.  When Steve and I were told, we both sobbed.  How could this be?  Why?  This can't be happening?!  So many thoughts raced through our minds.

Over the last year, Steve has had a grueling round of biochemo which entailed him being hospitalized for a week every 3 weeks, a major surgery (and hospitalization) to remove his right adrenal gland and the adrenal tumor attached to it, he has taken Zelboraf (with horrible side effects), he was hospitalized with a very serious virus for 11 days, he had numerous blood transfusions, platelet transfusions, and most recently has started a new drug (Yervoy).  Today Steve went back into the office for the first time in several months.  How fitting that he was able to return to work on his 1 year "Cancerversary".

I am so proud of Steve.  He has had many ups and downs over the past year.  But, he is still here fighting.  The melanoma that he started with last year is the same melanoma he currently has (minus the adrenal gland).  We would have loved to have him NED, but everyone is different and you just have to find the right medication while beating the clock.  Steve's current medication is a 90 minute infusion every 3 weeks for 4 rounds.  Then 4 weeks after the last round he will have scans.  That is a total of FOUR months before we know if the current treatment is working or not.  That is a long time to wait.  But, like I try and remind Steve every day, he is fighting to live......so we are living!  We may not be living the same life we were a year ago, but we are living.

We still find the time and energy to celebrate holidays and birthdays with family.  We attended MD Andersons Moon Shots Announcement.  We still try and squeeze in some dinner dates with friends.  We were able to take the kiddos on a mini vacation this summer.  Steve and I were able to celebrate our 6th wedding anniversary in New Orleans and go to our first Saints game.  Steve and I have been to the casino's a few times during the last year.  We had poker at our house once over the last year.  We were able to take the kids looking at Christmas lights.  Sure, there is plenty we wanted to do but couldn't, but we are still living.  Steve is still fighting. 

In 3 1/2 months, if we find out that this current treatment is not working, we will move on to the next one.  I eat, sleep and breathe melanoma and have the next two treatments lined up if needed.  We are lucky that there is so much research and advancement going on in the melanoma world.  There is still a long, long, long way to go.  But, they are so much further along than even a couple of years ago.

Thank you to everyone who has been there for us over the past year, we sincerely appreciate EVERYTHING and EVERYONE!