Thursday, September 26, 2013

Mesothelioma Awareness Day

While this post is unrelated to melanoma, I was contacted by Emily, the Community Outreach Director for a cancer organization known as the Mesothelioma Cancer Alliance and asked to help spread awareness of Mesothelioma today for Mesothelioma Awareness Day. 

Please take a moment to read her blog to read some facts about Mesothelimoma.

8 Facts About Mesothelioma 

Thanks!!


Tuesday, September 24, 2013

Biopsies, surgeries, clear margins........rinse and repeat

Steve had 2 biopsies on his back last Monday, September 16, 2013.  He had one via the "punch" method and one via the "shave" method.  Steve was called with the results today.  Both biopsies came back free of melanoma but were classified as "severely atypical".  According to his dermatologist, "severely atypical" moles have a high chance of developing into melanoma. 

video video

On November 14, 2013 at 2:15 pm, Steve will have a surgery commonly referred to as "wide margin excision" to be sure that they have clear margins on both of the moles.  Even though the moles are not melanoma, MD Anderson is very proactive in severely atypical moles since they carry such a high risk of turning into melanoma.  The procedure is typically an inpatient surgery and takes 1-2 weeks to recover from.  Steve will be left with a 4-5 cm scar in each area.  But what a small price to pay to keep the melanoma at bay!

Info regarding the surgery:

"The procedure is called wide excision.
The surgeon removes the rest of the tumor, including the biopsy site, as well as a surgical margin, (a surrounding area of normal-appearing skin), and the underlying subcutaneous tissue, to make certain the whole tumor has been removed.
The width of the margin taken depends upon the thickness of the primary tumor.
Most surgeons today follow the guidelines adopted and recommended by the National Institutes of Health and the World Health Organization Melanoma Program:

  • At least 0.5 centimeter margin in all directions (less than 0.25 inch) 
This typically results in a scar at least 4-5 cm (about 2 inches) in length, but it may be longer depending on the location on the skin and the size and orientation of the biopsy site.  Skin grafting may sometimes be required to cover the wound, especially on the face or on the fingers or toes"

When Steve met with the dermatologist last week, they diagnosed him with atypical dysplastic nevus syndrome. People with this diagnoses are anywhere from 10 to 12 times more likely to develop melanoma. 

I will keep everyone updated on Steve's surgery in November.  Until then, we are happy that Steve is NED.  Yesterday, Steve started the Livestrong program at the YMCA.  The program aims to aid cancer patients that are recovering from treatment in rebuilding their strength, agility, and stamina.  He will probably end up missing a few classes due to the surgery, but hopefully that will not affect the effectiveness of this class.

Monday, September 16, 2013

3 month scans.....6 months out from Ipi (Yervoy) completion

Wow!  What a day today was!  Steven and I had to be at MD Anderson at 9 am.  We got Sadie off to school on the school bus and dropped Ashlynn off at daycare.  We showed up to MD Anderson about 20 minutes late....whoops!  Luckily, they accommodate for traffic, over sleeping, not leaving in time, alarm not going off, whatever your excuse may be! 

Steve had a CT of his neck and we were off to his 11:00 appointment with Dr. Kim.  We checked in for his 11am appointment and they also checked us in for his 11:45 dermatology appointment.  Since Steve had to fast for his CT scan, I ran down stairs and grabbed us Chik Fil A while he waited in case they called him.  (They didnt).  We got called back around noon for his dermatology appointment (even though his appointment for CT results was technically before the derm appointment).  We waited almost 2 hours before the dermatologist came in.  Thankfully we brought our computers to keep us entertained while we waited! 


Steve waiting on dermatology to come in.


Steve has never really had a dermatology appointment.  He had one back in February of 2012, but since he was being admitted the same day for biochemotherapy, the dermatologist didn't take any biopsies.  At this appointment, the dermatologist did a very thorough body check (body, feet, scrotum, rectum, scalp, etc.).  She decided that 2 spots needed to be biopsied.  One spot was too big for a punch biopsy, so she did a "shave" biopsy.  The other spot she did a 8mm punch biopsy.  I get to take Steve's sutures out in 2 weeks.  Fun fun.

Spot "A" and spot "B"


video


After the dermatology appointment, we headed down to room 15.  You know, the room they told us to go to when we were finished with dermatology?!  Yeah, the guy sitting on the table in his gown probably didn't appreciate me walking in!  Haha!  Whoops!  Anyhow, we got put in a room to wait for Dr. Kim.  While we waited for Dr. Kim, Urvi, Dr. Kim's PA came in.  She immediately let us know that the scans looked great.  We went over scan results and she said that the abdominal CT scans showed no metastatic disease.  The MRI showed no metastatic disease.   The neck CT scan was not back yet, but they assumed no metastatic disease from the preliminary results. 




This was GREAT news for us!  This is the BEST news we could hope for today.  There is NO cure for melanoma, but you can live with "no evidence of disease" or "NED" for some time.  Some people stay "NED" for only months and others for years.  So, only time will tell.

After a fun, silly visit with Urvi, Dr Kim came in.  Dr. Kim confirmed "NED" and we had a good visit with him as well.  I love how Dr. Kim will sit and play my "well what if...." games.  "Well what if we would have come today and the scan would have showed X...."  "and what if it showed Y" and "what if XYZ"?  "What if we come in 3 months and the scans show X"?   He doesn't shut me up, he just goes along and answers my questions.  I sure love Dr. Kim.

After leaving MD Anderson, we needed to rush back to our side of town to get Sadie from Pep Squad practice.  Apparently it was raining while we were inside and the roads were flooded!  It was crazy trying to get out onto the freeway!   We made it with 1 minute to spare to get Sadie, picked up Ashlynn and went to dinner to celebrate "NED".  We even let the kids get dessert (which we never do)!  

Crazy "flood" drivers.



Nothing like trying to get home in a hurry!
Too much water!
Dessert!
Daddy and Sadie

Meet "NED"



We are so happy that Steve is NED!  We are also VERY realistic to the fact that there is NO cure for melanoma.  Steve can be NED 5 years or 5 days.  The melanoma can reappear at any moment.  But today, we celebrate NED.  We celebrate being the BEST you can be while fighting melanoma. 

Thank you to everyone for your love, prayers, and support. You're the best!!! 
Peace, Love, Cure Melanoma!

Sunday, September 15, 2013

Scan Day

Today was relatively uneventful.  We had to be at MD Anderson at 7:40am which meant we had to leave the house at 7:00am.  First on Steve's schedule was a CT of his abdominal area.  With this scan, he can not eat for 3 hours prior.  So, we just skipped breakfast altogether. After the CT scan, we caught the tram over to The Rotary House to have breakfast at The Oaks.  Luckily, the buffet was still going because we only had about 30 minutes until we had to be back over to the Mays Clinic for his MRI.  The buffet was not very good.  Most of the food was cold, hard, had been sitting, etc.  Then I about choked when I found out the buffet was $16 per person!!  You've got to be kidding me?!?!?!  I did manage to find a hot Texas shaped waffle and Steve got a nice, fresh omlet.  I don't like eggs, so that wasn't an option for me.  I loaded up on fresh fruit for the most part.  After breakfast, we headed back over to The Mays Clinic for Steve's MRI.  This took a lot longer than I remember.  He does not get an MRI with every set of scans, but it had been a while, so Dr. Kim decided to take a look this time around.  After the MRI, we headed home to watch some football!  We have to be back at MD Anderson tomorrow at 9am.  Steve will have a CT scan of his neck, a dermatology appointment and an appointment to go over the results of his scans.

I will post results tomorrow......

Steve waiting patiently for his CT scan.

AIM at Melanoma poster for this weekends walk. If you would like to sponsor us, you can do so at http://www.aimatmelanoma.org/en/aim-for-action/1158/1159/houston-2013/6567.html#

Friday, September 6, 2013

9 days and counting......

Melanoma has definitely changed our world upside down.  We live our life in 3 month intervals. Steve has scans, we get the results and then we breath a sigh a relief (luckily that is how it has gone so far).  We go home, celebrate and live "normal" lives for about a month.  After about a month, I subconsciously begin thinking about the next scans.  I may not know exactly how many days until scan day, but I am aware it is in a couple of months.  I double check Steve's online portal and make sure they have all of the correct tests and appointments scheduled.  Two more weeks pass.  Now Steve is about 6 weeks out from scans.  At this point, I am no longer celebrating the good news from the last scans, but fearing the worse on the next scans.  For the next month, I watch carefully every move Steve makes.  "Is that cough related to melanoma?"  "Is that fatigue related to melanoma?"  "Maybe I should call and get his scans moved up?"  I feel his lymph nodes.  I feel his side of the bed the moment he wakes up to make sure it isn't drenched in sweat (like it was prior to diagnosis).  Some people (including myself) have coined the phrase "scanxiety".  I am beginning to realize that it is not "scanxiety" at all, but instead this is our new life.  This will never go away.  Today we are 9 days away from CT scans and 10 days away from results.  At this point I am no longer fearful, but anxious (or maybe a combination of both).  Result day can't get here quick enough.  We have the next 3 months of our life to plan; whether it is more treatment or celebrating until the next scans.