Monday, May 8, 2017

Troy Aikman Has Taken Me Hostage!!

Saturday was one of those rewarding days that don't come along often enough.  A year ago I was asked to be on a patient panel for a MD Anderson Melanoma Symposium in Houston.   It went ok, nothing earth shattering came of it, and I was glad I participated.   A few weeks ago I was back in Houston for my first round of PET scan and brain MRI (all clear!!!) and Dr. Patel mentioned that they were taking the Symposium on the road, to Austin.   (Austin Tx...........God's country, where the smell of national championships hangs in the air like Aaron Hernandez..........too soon?)   She asked if I would participate on the patient's panel again, and I said "sure".   She said, "and by the way, Troy Aikman is moderating the panel."   Mindy let out a squeal of excitement and wanted to cancel her partner meeting in San Antonio the same weekend to attend the symposium, and I said "oh great, I'm sure Troy will be excited to meet me."   So I go to dinner in Austin last Friday with my nephew William (Mindy's son who is a freshman at Texas) which was a lot of fun, other than me saying that I'm eating Acai bowls every day for lunch, trying to eat really healthy, and William saying "oh, you eat like a sorority girl!"  Thanks William.

Saturday morning on the Texas campus was the symposium, with different doctors giving 30-45 min talks about surgical options, new drugs, the science behind them, ect...   The 3 of us on the patient panel went outside 45 min before out part started to meet and chat with Troy.   It was a lot of fun.   Hard to tell by the picture which appears to be a very happy Troy Aikman, and me trying to blink SOS like I'm being held captive in a Japanese prisoner camp!    I'll let you be the judge:

The talk went GREAT and the stories from the other two patients were amazing.   I met a bunch of people afterwards and was really touched by their stories and the impact that the symposium had on them.    I'm blessed to have been asked to participate!    And Troy was really nice, and will bring a lot of awareness and attention to melanoma research and preventive options.


Thursday, February 2, 2017

And the angels sang and the trumpets blared!!!

Psalm 69:30

Let me shout God's name with a praising song,
Let me tell His greatness in a prayer of thanks.

I'm very thankful for many things in my life and I've done a poor job of expressing my thanks and appreciation over the years.   I'll try to be succinct in this post, in order to hopefully let my prayful thanks be the lead.

Dasha and I headed to MD Anderson Monday night for appointments Tuesday.   I love getting to see Mindy, Dave and the kids and I'm blessed to have them in Houston for a place to stay!    9:30 am sonogram of my neck, and we headed upstairs to wait for Dr. Ross.   His nurse came in and we chatted for a long time, and she gave us insight into how we should approach another team at MD that we can't get a quick answer when we need them.   Dr. Ross and his PA came in and gave us the great news........"the sonogram showed the tumors are basically gone, the nivo/ipi has done it's job, and there is nothing for me to go get, so surgery is not needed at this point".  

So here is what has happened, explained in "non doctor" language:

The nivo/ipi is an immunotherapy treatment.   It tries to train your T-cells to attack bad things in your body, like cancer.   Think of chicken pox.......why do you only get them once?   Because your body trains itself to remember the virus and doesn't let it rear it's chicken head again.   The T-cells in me attacked the tumors, and wiped them out.  Now we hope that they will "remember" what the melanoma looks like, and will keep it away in the future.   Why did I have side effects?   When it ramps up your immune system, it sometimes turns and attacks other things, two of it's favorite and easiest things to attack are lungs and colon......hence the cough and aardvark issues.

We had another appointment with Dr. Lewis in the Head and Neck Surgical Center, and she agreed with Dr. Ross.   No need to do surgery at this point, and she had another interesting thought on surgery in the future.   Because I've had a ton of surgeries in the same location, she would avoid surgeries at all cost, instead she would tell Dr. Patel to reach into her 'bag of tricks' and throw something new at it because I had such a good reaction to the nivo/ipi.  

I head back to MD in a month to do a PET/CT scan, brain MRI with contrast, and another sonogram.  That will hopefully be uneventful, and they will continue to monitor me quarterly to make sure everything is going smoothly.   If something changes, I'll deal with that and will take address it head on again!!!

So there you go.   What an answer to prayer!   I can't begin thank everyone that has prayed for me, brought meals to the house, called, emailed, and the Go Fund Me page, where do I begin to say 'thanks' for

But none of this is possible without an amazing God, that cares about things like T-cells, and puts researchers in place years ago to start working on controversial drugs like Nivo/Ipi.   HE knew the outcome of this journey and orchestrated it from the start.



PS   Please pray for my friend Tracy who has surgery with Dr. Ross next Monday!  Thanks.

Monday, January 23, 2017

Counting Aardvarks

It's been a while since I posted so I wanted to give a quick update on everything.

Some people count sheep.......I count aardvarks.   For the last 6-8 weeks I'm averaging 3-5 per day........every day.   A couple of weeks ago that number got to 12, and Mindy and Dasha convinced me to go to Plano Presby ER.   Six hours later I'm heading home not knowing much, other than "your blood work looks ok to head home".   A week later my count is back above 9, and I'm heading to Legacy ER where they did an abdomen CT scan, IV for fluids, and ran tests.  (thanks to Thumper and Dr. Woody who went over and beyond taking care of me)   I dropped off an aardvark sample the next day, and hope to get news back on that early this week.   (Getting the aardvark sample in two cups, then to Legacy ER could be a blog in itself)

So here is what I'm dealing with......when you do immunotherapy, it takes a stick and puts it in your immune system and stirs it all up like a bee hive.   Your own immune system looks around and wants to find things to "attack".   Two of the favorite things for it to mistakenly attack are your lungs and colon.    Both are easily irritated, and only snowball downhill from there.    Being an overachiever, my immune system is attacking BOTH!     Aardvarks have been WELL documented, and I have a cough that runs from annoying to choking and gagging myself........good times.   

I've also been trying to get back down to MD Anderson to meet with the surgical team.   That is scheduled for Jan 31st.   I'm meeting with Dr. Ross and a surgeon from the head and neck team.   Basically the plan all along was to do the nivo/ipi double treatment, surgery, then go on the nivo long term regiment.   With everything going so well, it will be interesting to see what they want to do.   I'll update next week!