Tuesday, June 18, 2013

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!

Monday, June 10, 2013

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!

"Cancer has given me a new outlook on life."

Since Steve and I had 'The Art of Surviving' seminar to attend yesterday and Steve had to be at the hospital at 6:30 am, we decided to stay the night at The Rotary House.  The Rotary House is a hotel owned by MD Anderson and operated by Marriott and is connected to MD Anderson by a sky bridge.  The hotel is only available to MD Anderson patients.  After the seminar, we were too tired to leave for dinner so we had a nice dinner at The Oaks Grille inside The Rotary House.  After dinner, we turned in early to get some sleep before our 6am wake up call.

We got up at 6am and got ready to head over to MD Anderson.  Since it was so early, the shuttles that usually run between the Main building and the Mays Clinic were not yet running. So, we had a nice 1/2 - 3/4 mile walk to Steve's first destination.  Along the way, we were able to stop and let Steve take his picture with his "survivor" banner.  It is survivor week at MD Anderson, and Steve was asked to provide a quote and join other survivors on banners throughout the skywalk/hospital.  What an amazing honor!!  Unfortunately, with melanoma you are never "cured".  We consider Steve a survivor everyday!! 

Steve with his banner and quote.

The skywalk with survivor banners.

Dr. Bogler from The Art of Surviving seminar.  Dr. Bogler has male breast cancer. 

Marisa Mir and her husband.  Marisa works at MD Anderson in the communications department and is a cancer survivor.

Steve's first stop was to have his blood drawn at the blood lab.  At 6:45 am there was no wait and he was in and out in minutes.  Next, we headed upstairs to check in for his abdominal CT scan.  There was a fair amount of people for a Sunday, but Steve was out by 9am.  His CT was scheduled for 9 am, so we were pleased to get out of there early.  After breakfast, we headed to our house and got the last of our things and cleaned up.  Today was the last day at our house and the first of many nights at our apartment.  We are having a new home built and should be in the apartment 6-7 months (sounds fun, huh?)

Breakfast at The Oaks Grill

Good Bye, Glade Bridge Ln!!!

We have been trying to get the apartment in order all night.  Things are everywhere!!! It is a nice distraction from the "scanxiety".  Steve will have a head/neck CT in the morning and then meet with Dr. Kim at 11:15 to discuss the results.  Our hopes are that the cancer is gone!!  We will also accept stable or shrinking tumors.  And, if worse comes to worse and the scans show something new, we have a few clinical trials we are interested in. 

Results tomorrow.............breathe. 

Saturday, June 8, 2013

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!