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 that......wow.

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.

AMEN!!!!!!!!

Mike

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!

Mike

Thursday, December 22, 2016

Aardvark Races!!!!!!!!!!!!!

After getting home to a big "Welcome Home Daddy" sign Saturday evening and seeing the Jackson's off to Lubbock Sunday morning I was exhausted by the time we got home from church.    Hanging out on the couch most of the day, taking it easy was the plan.   Unfortunately, I had taken the horse steroids for 4 days, then stopped while waiting for my script to be filled for 24 hours.   NOW I know that aardvarks don't like that inconsistently, and most of my Sunday looked like this (imagine aardvarks running):



I had already cancelled my flights to Houston for Monday, because there wasn't a chance I was going to go through with the 4th double treatment.   By Sunday night I was miserable, and Dasha begged me to book flights to keep my appts at MD Anderson Monday morning.   A late night call to Mindy to let her know, and 3X the cost to re-book the flights I had just cancelled 6 hours earlier, and I was watching a Supercross 2017 Preview show at midnight.  

Made it to HOU easily, did blood work and waited to see Dr. Patel.    Here is the recap.........


  • I'm done with the double treatments.   The nivo/ipi did it's job and jump started the Tcells.
  • I might NOT do the nivo 2 year regiment, depending on what Dr. Ross says
  • Dr. Patel is thrilled with the reduction in tumor sizes
  • Next step was to email Dr. Ross's team (surgeon) and get back down for scans in Jan
  • Then Dr. Ross will decide if he wants to do surgery or wait and watch
From the beginning I've placed my trust in the amazing teams at MD Anderson, and will lean on Dr. Ross's expertise on when to do surgery.   Dr. Patel said my stomach issues Sunday were 100% from stopping such a heavy dose of steroids cold turkey for 24 hours.   So she put me on a stair stepping down script for the next 3 1/2 weeks.   My arms look like I'm a bad heroine addict.   Completely bruised up with track marks from so many needles last week........it's a good look!

I have something next week that I've never had in "work life"......time off!   Splunk's office is closed from Dec 23rd through Jan 2nd!   I'll still be "working", but time........wow.    (sorry Damon.....high 4?)

Merry Christmas everyone.........thank you again for thoughts, prayers, meals, and more love and support than I can wrap my head around.    I'll update as soon as I have a plan with Dr. Ross and his team.

Mike


Tuesday, December 20, 2016

Escape From Plano Presby......Snake Plissken style

Image result for snake plissken


Escape From NY.........how it didn't win every award in 1981 is beyond me, great movie.   Snake Plissken, played by Kurt Russell is offered complete immunity if he can get the President out of Manhattan, where his plane was hijacked and crashed.   Oh, and Manhattan was made into a maximum security prison, walled, and abandoned to be run by the inmates and falls into anarchy.   VERY much like the scene at Plano Presby last week!!!!!!!!

One of these scenarios is true.........you be the judge. 

Scenario 1:   I've had enough of hospitals beds, and am ready to get out.   I call my dear friend Dick Cheney and have a copter come in the cover of darkness and hover above the CareFlight landing pad right outside my 4th floor window.   I barricade the door, to keep from having my blood pressure checked during the escape, and tie thread count 20 bed sheets together into a rope.   Scale down the side of the building to the waiting rope ladder of the helicopter.   Climb up and shake Mr. Cheney's hand as he says "let me get you home Snake.........."

Scenario 2:  Mon/Tue/Wed and Thurs morning SUCKED.  I'm not saying I was in bad shape, but Tuesday night I played poker with Mickey Mantle, Bob Hope, and Arnold Palmer.......and they invited me to dinner the next night.   Long story I'll get into later, but after getting on the steroids that have only been tested on horses, I'm feel 100% better by Thurs evening.  Liver #s are slowly coming back to what they should be.  Saturday I have blood taken at 6:00 am, and I'm waiting for a # below 160 to go home.   Comes back at 203ish.   Several "hospitalists" come in and I can EASILY talk them into sending me home, then the GI comes and says "I'll make you a deal".....and I like deals!!    "Let's draw blood again (it's now about 4:00 pm), and if it's come down, you are trending in the right direction, I'll let you go home, if it's higher or the same, you can get comfortable again because you aren't going anywhere.   90 minutes later the numbers came back lower, and I'm being unhooked from IVs and heading out into 20 degrees with a 30 mph wind from the north.   Hey, I was TOLD it was 70 earlier today????!!?!?!    A big "Welcome Home Daddy" sign was waiting for me when I walked in the door, what a great feeling.

A bunch of people helped Dasha last week and "thanks" doesn't begin to say how much it meant to us.   I'm not even going to try and mention everyone here, but just know that I'm humbled and overwhelmed by the outpouring of support.    Thank you very very much.

I was home Sunday, had a rough day, and headed to MD Anderson for a face to face with Dr. Patel and her team Monday.   I'll update that important meeting and the plan going forward in the next day.
Favorite Snake Plissken quotes:

Bob Hauk:  You going to kill me, Snake?
Snake Plissken:   Not now, I'm too tired.
(pause)
Snake Plissken:   Maybe later.

Bob Hauk:   I'm not a fool, Plissken.
Snake:     Call me "Snake".

10 min later....
Bob Hauk:   We make one hell of a team, Snake!
Snake:    The name's Plissken!

Mike

Thursday, December 15, 2016

Plano Presby Beds Suck!!!!

I'm at the office on Monday, and I haven't been feeling great for the last week.   I have a really bad aardvark (see previous blogs if you just joining us) then another.   I call the boss (Mindy) and ask her if an aardvark is supposed to be red.   We google, and only see an aardvark that was cruelly dyed red as a prank.   Pool little guy.   Mindy says that is one of the 2 things that you drive straight to the ER for.   I call Dasha and hop in the car and drive to Plano Presby.  Get here about 3:15 and check in, and waited 90 minutes to be called back.   The ER doc was super nice, but even me writing on a post it note the correct spelling of nivo and ipi had him confused as the next steps.   They did a scan of my stomach and the liver and colon we very inflamed.   They checked me in and moved me upstairs to a room, started an IV and fluids.   Tuesday they got aggressive with anti-biotics and started running more tests.    My liver numbers were way off so they started to use that as the barometer for when I could leave.   Dr. Choi here at PB called Dr. Patel at MD Anderson, and Dr. Patel relayed the seriousness of the situation.........."He's not going anywhere for multiple days, maybe Sunday at the earliest."   UGH!!!!!!!!!!!!!

So I've been here since Monday, I didn't eat anything other than 2 crackers, 2 bites of chocolate pudding, and a sip of broth since Sunday evening.   They have run a ton of tests and I'm constantly getting pricked for blood sugar test or blood drawn or moving an IV.   My left arm looks like a pin cushion.........good times.   And the beds......let's just say it's not the Ritz.   They are about 5 inches thick, and trying to sleep is a distant thought being tied to an IV, and with nurses coming in every hour to do something.

Today I've had two "meals" of spaghetti with butter and tomato soup and feel 100% better.   The girls came to see me yesterday and I had to lie down most of the time they were here, so Dasha brought them back up today to see me doing so much better.   I would LOVE to get out of here tomorrow, but I just talked to one of the AMAZING nurses and they said 'probably won't consider it until Sat at the earliest'.    I've heard it's cold out, but from my view out the window it just 'looks cold'.   I did see CareFlight land right outside my window, so that was cool!   (small victories...like taking a lap around the 4th floor and calling that a walking victory......yeah Mike!)  I did have an AMAZING "nurse" step to help this afternoon..........



Thank you to Dasha, my Mom and Dad, Gary and Sue, the Jacksons and everyone that has been helping Dasha with the girls.   Neighbors this week have carpooled the girls to school, volleyball and Girl Scouts.   They picked up Dasha's X-mas list for the girls and went shopping.   They bought hundreds of dollars of groceries at Costco and dropped it all off on the kitchen counter.   Kelly Head, Anissa McCurdy, Wendi  Berge, Allison Noon, Chris Calandro and Leslie Wright......wow...thank you!!!!!   To Luann Glatch, Wendi, Sherre Barton and Allison who carpooled the girls all over Friscco and McKinney.     Thank you thank you thank you!!!!!!!!!!!!!

Also I've been simply overwhelmed with the amount of visitors.   Sorry I've been a barrel of laughs as I've been sleeping for your entire visit!   Also, Mindy the Wonder Twin made a surprise visit today as she walked through the door today.   Flying up this morning from Houston to surprise me, then catching the 10 pm flight out of Love back to H-Town.

I'm more blessed than I can tell you or put into words.   Thank you everyone.   I'll update tomorrow or Saturday if I get more details on going home.

Mike and Dasha

PS   I was really saddened today to hear of the passing of Craig Sager.   A champion and a fighter until the very end was also being treated at MD Anderson and graciously lent his voice and fame to the front page of the MD website to help spread the word and raise funds.   RIP Mr. Sager.

Tuesday, December 6, 2016

"Don't make me call Mindy"

Quick post to let everyone know that I'm not going to MD Anderson tomorrow (12/7) for treatment.   Side effects have been acting up in the last week or so, and I've been acting like they are no big deal.   But they have been getting worse, and bordering on what Dr. Patel would say is 'worrisome'.   Dasha said "Don't make me call Mindy".   That is the ultimate threat!!!!!!!   It's like President Trump getting ready to hang up the phone with North Korea, and saying "where is that nuclear football??" just loud enough so Kim Jong-bad haircut can hear him.  So I emailed Dr. Patel and her nurse, and they said to wait at least a week.   I'm in Washington DC next week for 2 days on business, so this is a probably a good thing and a blessing.   I gave the nurse the week of the 19th go get me back down to Houston, and I'll update when I have the appointments lined out.

Speaking of blessings..........I've tried to think of a way to express my gratitude for the Go Fund Me page, and after going through 10+ ideas, I decided to honestly tell a story......

So, I've had a stack of bills in my backpack for a while.  (yes I'm too old for a backpack, but I work with 20-30 somethings, and they give everyone a Splunk backpack when we start)   Some are from the surgery in November of 2015, some from MD Anderson, some from random treatment stuff.   As anyone who has had a bunch of surgeries or treatments knows, you get all kinds of bills long after the surgery.   (example......a company in Oklahoma that makes the surgical socks that compress and release on your feet during surgery)   So that stack had grown to a solid inch and a half plus if I set it on my desk.   I took that entire stack out and wrote checks to each and every one of them.   I can't express the lingering stress that stuff like that creates, and the GFM allowed me to pull them out, and be 100% done with them.   What a blessing......thank you.

Mike and Dasha

Thursday, November 17, 2016

A LONG Day

The last couple of weeks have been a blur.   My beloved Chicago Cubs....wow.   I woke the girls up to watch the last 3 outs, and they asked why Daddy had tears in his eyes.   I smacked them both in the back of the head and sent them back to bed.   (I kid)   I could do 3 blogs on the Cubs, but I'll save that for another time.    A beautiful wedding in Hilton Head for Samantha and Ryan could not have been more perfect!    Then I drove to the North Central Missouri to the Kossmeyer farm......my happy place.   This could be another 4 page blog, but with Chris over my shoulder filming for Buckmen TV, I shot a 154 1/2" buck with my bow and it will be a show next year sometime.   Crazy.

So the 3rd of 4 nivo/ipi treatments was scheduled for 2 weeks ago and was pushed back because of some stomach issues and a bad cough.   Dr. Patel said it's from a 'lung toxicity called pneumonitis' and she started me on a Medrol DosePak.   That was finished last week, and the cough is better but still acting up.   Yesterday I was back in Houston at MD Anderson for the 3rd infusion.    Early flight out of Dallas and I did blood work at 9:00 am.   Then waited 4 hours and 20 minutes to be called back to see a doctor in the melanoma clinic.  (Dr. Patel was on vacation yesterday)   90 minutes in the little room in back and they sent me for a chest x-ray.   Then an hour later we are waiting for the doctor again.   She really left it up to me, asking about side effects, ect....and we (I say 'we' because Mindy really makes the final decision...........and no, I'm not kidding) decided we were good to go.   

Another 2 hour plus wait at the infusion center and a surprise visit from Dave, and we were called back at 5:15.   Luckily the nurse was on her A game when I explained we needed to go fast, but at the end of the day the nivo takes an hour, then 30 min observation, and the ipi takes 90 minutes.   Also time for getting drugs from phamacy, ect...   Finally finishing and running to the airport, I barely caught my 10:00 pm flight home.   Getting to the house around midnight.........that is a long day.   Thanks to Mindy for being my wing man, and always showing up with snacks!

One thing I wasn't going to mention, because I feel very odd about it, but I feel compelled to say thanks to so many people.    A few weeks ago my buddy Scott Posavitz sends me an email explaining he's already set up a go fund me account to offset expenses, and sends me a link.  How do I feel about this I kept wondering, then Mindy asks me about the last 5 surgeries and treatments, and how much we've spent over the last 8 years.   She said "God has this all under control, relax."     Soooooooooooo..........I get home that night and open a $1380 bill from MD Anderson.   The next morning I get an alert from Go Fund Me that the balance is $1630.     I think.......oh cool......a little more than that exact bill!   The NEXT morning I get an email from GFM........"one of the deposits into your account came from an unknown source, it will take a 7-10 business days to sort out, and we reduced the total to $1380."   Uh.........yeah........HE has this under control.    Thank you to friends and family and people I've never met.  I am humbled and blessed, and it means more to me than I could ever express in a blog.

Next week I'll post again, and the side effects should be in full swing......and with side effects you get COMEDY on the blog!!!!!!!!!

Mike
Go Cubs Go