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 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"