09/06/2016: 29th Round Infusion at MD Anderson

05:15: Up I am.

05:45:  Out the door we head.  My dad is traveling with me.  My wife has school.

06:00:  Arrive at the airport we do.

06:10:  Through security we are.

06:15:  Sitting at C5 while we wait on the Spirit flight to Atlanta to clear out before going to sit at C6.

07:00:  The flight to Atlanta is boarding and seats open up by gate C6, so we move.

07:39:  The Atlanta plane is being pushed back.

07:47:  The plane from Ft. Lauderdale arrives and unloads.

08:00:  The initial announcement for the flight is done stating zones and boarding and baggage etc.

08:05:  I pack up my laptop in prep for boarding.

08:10: Boarding begins.

08:13:  I am seated in the plane in the big front seat letting my Dad take the big front seat by the window.

08:35: Cabin door closed.

08:37: Pushing back.

08:41:  Taxing to runway.

08:47:  On the runway.

08:48: Take Off

09:38: Touchdown.

09:45: We step off the plane.

09:48:  Bathroom break.

09:54:  Through the walkway to the skyway.

10:00:  On the skyway.

10:04:  Off the skyway.

10:08:  The express 102 bus pulls up.

10:10:  On the bus we are.

11:13:  Off the bus.

11:20: On the light rail.

11:43:  Off the light rail.

12:00: I check in, and they do have a room available, so we go up to the room, room 303.  I get on my laptop take care of some work.

13:06:  All done, time to go get my bloodwork.

13:15:  I check in on the second floor diagnostic Center in the main building for bloodwork on their computer terminals.

13:30:  I see my name on the screen and go to the frontdesk as it says come to frontdesk.  They tell me my bloodwork orders were cancelled.  I tell them I need my bloodwork foe treatment tomorrow, they say they will look into it.

13:45:  I am called again to the frontdesk and someone else tells me that my bloodwork orders have been cancelled.  I tell them the other person was working on it because I need my bloodwork for tomorrow’s chemo.  She tells me she will check up on it and that I can sit back down.

14:05:  I see my name the board again, but this time is because they are ready for me.  I go wait by the door area.  Samantha checks me out with my date of birth and medical record number before putting my armband on.  We then go to the back.

14:10:  I am sitting down to the chair assigned to me.  Samantha asks me which arm, I tell her whatever she can find.  Another nurse in there remembers me and says oh it’s the hard stick.  Samantha feels my right arm, no luck, she feels my second arm and feels one she wants to try.  She sticks me but no blood.  She keeps trying to catch the vein but it is no moving on her and she can’t get it completely.  She nicks it because blood starts coming around the needle but no flashback.  She tries for about 5 minutes before calling an associate.  The associate moves the needle around some more and then gets some flashback.   Samantha puts the tube in to collect the blood and it is a very slow dribble.  It takes about 3 to 5 minutes to collect the blood in the first tube and about another 2 minutes for the second.  All done, they pull the needle out, put tape over the gauze and send me on my way.

14:45:  All done with bloodwork.

15:00:  I grab some frozen yogurt.

15:16:  We head out back downtown to the Bombay Pizza Co.

15:52: We reach the Bombay Pizza Co.  I order my normal, lasagna and a medium pizza, half chicken marsala, half K Renee (shrimp, crab meat, cilantro).  Great meal as always!

17:10:  All done with another great meal.  My dad and I decide to take an adventure and take the Red Line all the way to the north end.

17:45:  We reach the north end.

18:00 We depart the north end and head for the very southern end, passing up the Energy Stadium that the Houston Texans play in.

18:57:  We reach the south end, we turn around head back to the Texas Medical Center Transit Center.

19:15:  We are back at MD Anderson.  We go back up to the room I check a few things.

19:45:  We had back downstairs.  My dad gets the salad bar and the restaurant and I get some more frozen yogurt.  The restaurant is not what it used to be and does not offer as much of a selection as it used to.

20:35:  We are all done and head back up to the room.  I work on a few more things remotely.

23:30:  I head down to the park.  I grab some chicken fried steak and mashed potatoes.

23:54:  I am heading back to my hotel room.

23:59:  Back in the hotel room, another day done!


08/24/2016: 28th Round Infusion at MD Anderson

00:00:  Still on the computer.

01:00:  To sleep I go.

05:00:  Up I am I take my thyroid medicine and back to sleep I go.

06:45:  Up I am again.  Shower I do, and prepped I get.

07:45:  My numbing cream is on.

07:50:  My teeth are brushed.

07:55:  My bag is semi packed.

08:00:  Back on my computer catching up on my blog.

08:10:  Wake up call to my wife I make.

08:15:  Pack up my laptop and bags I do.

08:30:  I check out, making 2 reservations for upcoming trips.

08:45:  I check in on the 8th floor for my port access.

08:50:  I am called to the back.

09:00:  All accessed.  Down to the 6th floor we head.

09:02:  I am check in on the iPad

09:03:  I am called to go to the frontdesk and get my arm band checked.

09:08:  I am texted to go to the hibiscus hallway for my vitals.

09:13:  All done with vitals, back to y seat I return and fill out my study paperwork for side-effects from the drug.

09:18:  Just sitting in the waiting area waiting to be called back to see the doc.

09:25:  Michael comes and gets me and takes me to the back.  He asks me the normal questions, pain, fall lately, same medications, any problems, the usual follow up.  All normal.  I tell him I experience a little bit of tiredness in the morning, buy still working over 40 hour weeks and not stopping to rest or nap or anything.

09:35:  Dr. Rodriguez shows up and she is happy with my labs and liver levels.  My liver levels are even better. She for her examination and all is good.  She said the tiredness night be from glucose levels.  Ronstadt following up with that.  I told I had started that follow up and will see my primary about that soon and also see my primary about my thyroid tsh levels as well.  My tsh levels are high, although my t3 and t4 levels are in line.  Therefore my pituitary gland is not shutting off the thyroid hormones to make the thyroid produce more to bring the thyroid levels back into check.  This is a side effect of the drug, but was going on before I started the drug and was diagnosed as a problem when my initial bloodwork was done as an overall check before starting the study.  This could be a result of the radiation treatment that I had done in Oct/Nov of 2013 because the radiation can damage the thyroid, however the pituitary gland should be responding to normal thyroid t3 and t4 levels.  This will need further follow up and diagnosis which I will with my primary doctor, Dr. Yager.  We went over the warnings the FDA had out out about stem cell transplant after having opdivo/nivolumab that the risk and complications from host vs graft disease has increased because of the nature of the study drug boosting the immune system.  My next PET CT scan is coming up on October 18 to see how I am still doing.  See if I have any chance of extending the drug past a year of remission or if they will stop treatment then as as of that point I will be taken off the study.

10:00:  All done with Dr. Rodriguez.

10:10:  The study nurse covering for Emily comes in and collects my study paperwork and gives me my new paperwork.  She tells me the process of which we will be going through for three months while Emily is out.

10:25:  All done with the study nurse.  I head downstairs to check in at CRTC.

10:35:  I check in at the CRTC.

11:05:  The research nurse finds me and gives me a questionnaire to fill out.  However it is for before Infusion 29, this is only infusion 28 because of the withheld infusion a month ago.

11:15:  I am called to the back.  I get my vitals taken.

11:20:  I am in Room 8.

12:30:  My drug arrives, everything is double checked.

12:35:  My drug infusion starts.

13:35:  Drug infusion done.

13:40:  Flush dune.

13:45:  De-accessed.

13:50:  Packing up my laptop and everything.

13:55:  Away we go, heading back to the rail.

14:15:  We stop for some frozen yogurt.

14:35:  All done, on the way to the light rail.

14:45:  Across the skywalk and out the Duncan building.

14:48:  At the lightrail.

14:55:  On the lightrail heading into the city to catch the express 102 bus go for airport.

15:24:  We arrive at the downtown transit center, however this is the end of the line for the redline because of a line issue.  Everyone is forced off the rail.  I know the express 102 has a stop in the area.  I ask the metro fair inspector where the 102 bus stop is, and it is right across the street from the downtown transit center.  We walk across the street and a bus is just pulling up.

15:25:  We are are on the 102 express bus.

15:37:  We are at the bus stop we usually get on at, so the rail can get you to this point if you miss the bus, but you would have to know you missed the bus.

17:09:  At the airport.

17:13:  No lines at all, not even one person at the tsa check point.

17:15: Through security.

17:30: Boarding begins.

17:34: Sitting in my big front seat in the plane.

17:42:  About a 45 minute flight.  Should be a smooth flight until we get ready to land as thunderstorms are in the new Orleans area, so it may get bumpy around then.

17:54: Boarding complete.

17:55: Cabin door closed, jetway pushed back.

17:58: Push back.

18:03: Taxing.

18:06: Take off .

18:53: Touch down.

18:56:  At the gate.


08/23/2016: 28th Round Infusion at MD Anderson

05:15:  Up I am.

05:30:  Dressed I get.

05:45: To the airport we head.

06:04:  At the airport.  No lines at security.

06:14: Through security.  Just hanging out around the airport to my 08:55 flight.

08:04:  The plane from Ft. Lauderdale arrives.  We are flying in their yellow plane today.

08:10: Boarding begins.

08:15:  Sitting in the big front seats today.  2A

08:40:  Pushing back.

08:44: Taxing

08:52: Take off.

09:47:  Touch down.  We did about a loop about 5 minutes out before coming in for landing.

09:52:  Off the plane.

10:00: On the skyway.

10:13:  Waiting for the bus 102 Express Bus to downtown at the bus stop.

10:37:  On the bus.

11:28:  Off the bus.  Helping a stranger from new Orleans trying to get to Pasadena TX along the way.  We ask a transit officer who tells him to take the 40 bus towards Pasadena

11:33:  At the light rail station.

11:36:  On the light rail.

12:03:  Off the light rail.

12:10:  In the Duncan building.

12:20:  I checked in at the Rotary house.

12:30:  I am in my room 820.  I open my laptop and get to work.  I add a remote printer to a remote desktop for s client.  I also install some activex controls for another client and renew a domain name for another client.

14:30:  All done all of my work.  Time to go do my bloodwork.

14:44:  I check in at the diagnostic lab in the main building on the second floor.

15:00:  I am called to the back, they take 4 vials of blood.

15:10:  All done with the vampire.

15:15:  We head over to the frozen yogurt, a new flavor, candy bar smash.

15:35:  We start our way through the buildings to the skywalk, to the mays clinic and duncan building, then out to the street and rail we go.

16:00:  On the light rail.

16:30: Off the light rail downtown and into the Bombay Pizza Company which is a mixture of Italian and Indian food that I tried last trip, and really liked.

17:35:  All done with another great meal.  We walk back down the street to the next rail station heading south.

17:45: At the rail station.

17:55:  The next rail picks us up.  We take this all the way to the end of the line, pass the NRG stadium along the way.

18:17:  At the end of the line.  We switch from the front car, that is now going to be the back car, back to what will be the front car.  Kinda like the streetcar, they just turn their direction around and drive from the other side of the train, but they have 2 cars, both of which have forward and reverse facing operating quarters.

18:25:  We are back off the rail and heading back to the Duncan building.

18:28:  Back into the Duncan building, through the mays clinic, back into the hotel room.  I check on a few things for clients and help my wife remotely order her school books since her college semester started back up yesterday.

20:00:  I go downstairs and grab some more frozen yogurt.

21:00  Back upstairs on the laptop.

23:00:  Over at the park grabbing a drink.

23:30:  Back in my room, and yes back on the computer…


08/10/2016: 27th Round Infusion at MD Anderson

07:00:  My alarm goes off and up I am.

07:15:  Usual morning activities.  Shower, etc.

08:00:  I apply my numbing cream, put the saran wrap over the area and dressed I get.

08:25:  I head out of my room to go get my port accessed.

08:35:  I check in on the 8th floor of the care clinic.

08:40:  I get my arm band.

08:45:  I am called to the back.

08:55:  All accessed.

09:05:  Back at my room to pack up and check out.

09:45:  I check out of the rotary house.

10:05:  I check in at 6th floor, Lymphoma and Melons Center.

10:15:  I get called for arm bracelet and info sheet.

10:20:  I am called to the back for vitals.

10:24:  I come out of vitals and Michael is looking for me to bring me into the back.

10:25: I am in the back in the patient room waiting to see Dr. Rodriguez.

10:30:  I see Abey.  My liver levels are back to my normal.  Elevated but my baseline is elevated, so back to my normal.  Could have been a gall stone or other injury that caused my extremely elevated levels.

10:35: Dr. Rodriguez comes in and checks on me.  I have not seen her in 6 weeks.  With appointment times and her being off.

10:50:  All done with Dr. Rodriguez.  She does not know why I jumped up with the levels.  Their main concern was issues with the drug injuring the liver from toxicity or from the immune system attacking the liver.  However all is back to normal and we will continue with treatment.

10:55:  Emily comes and sees me and introduces me to her temporary replacement Gia who will be taking over while she has her first baby.  I ask about my payment for my study expenses and Gia will follow up on this for me.  I get Gia’s email address and email her for updates.

11:00:  We head to the CRTC center.

11:05:  I check in at the frontdesk.

11:40:  I am called to the back.

12:00:  I am in room 10 and Ken comes and checks on me and he will be my nurse today.  Just waiting on the drug.

12:55:  My drug arrives.

13:30:  The drug is here, but need to wait for the vampire to come pull blood from my port for the study protocol.

13:40:  The vampire shows up and takes my blood.

14:10:  My food arrives, turkey and cheese on wheat bread, tomato soup, cantaloupe, pineapple, lemon cookies, as baked lays chips.
14:35:  Infusion is done.  Flush begins.

14:40: Flush complete.

14:45: Deaccessed.

14:55:  Out of the room.

15:00:  Hitting the skyway.

15:10: Across the skyway, out of the Duncan building.

15:15:  At the light rail.

15:17:  On the lightrail.  Some crazy high woman has an episode falls on the floor and starts screening obscenities at one of the transit centers.  Transit police and a manger is at the location when this happens and the woman is quickly removed and we continue on our way.

15:38:  We are at our stop, we get off, and walk the two blocks, however during our walk we see the 102 Express Bus pass on travis, so the crazy high woman just cost us 15 more minutes.

15:53:  Another Express 102 bus pulls up to the stop and on we get.

16:46:  We arrive at the airport.  We finish our drinks and bathroom break.

16:55:  We are at security, no line again at security, so we are seen right away and are through security in less than 5.

17:00:  Through security, to the skyway from concourse C to concourse A.

17:10:  At our gate, only to find out that our flight is delayed, showing an 20:45: take off time instead of 18:09.  Time to sit down and do some remoting into some computers and do some work while waiting.

20:45:  Still sitting at the concourse, our plane is here, but waiting on the crew.  They said we should be out of here at 21:30, so just waiting.

21:10:  Boarding begins.

21:29: Sitting on the plane.

21:45: Door closed.

21:49: Pushing back.

22:07: Take Off.

22:53: Touch down.

23:00:  My parents pick us up from the airport.

23:15:  Home we are.

23:25:  Applebees for a late supper.


08/09/2016: 27th Round Infusion at MD Anderson

05:05:  Up I am.

05:45:  Out the door we head, my Dad is dropping my wife and I off at the airport.

06:00:  At the airport.

06:05:  At the security check in agent.

06:20:  Through security.

06:30:  Waiting at terminal C5, while the Spirit Flight to Atlanta clears out of C6.

07:00:  Spirit Flight to Atlanta is boarded, so we switch over to gate C6 to sit and wait.

08:20:  Sitting on the plane in my big front seat.

08:37: Door closed.

08:40: Pushing back.

08:48:  On runway.

08:49:  Takeoff.

09:39:  Touchdown.

09:43:  Off the plane.

09:50: At the skyway.

09:52:  On the skyway.

09:55:  Off the skyway.

10:00: Bathroom break.

10:10: Waiting for the bus at the bus stop outside the airport.

10:30: The bus gets here.

10:43:  Off we go, heading to be city.

11:30: Off the bus, heading to the light rail station.

11:38:  At the light rail station, we see police mounted horses patrolling Main St.

11:40: On the light rail.

12:03: Off the light rail.

12:08: In the main building.

12:20: I check in at the Rotary House Hotel.

12:30:  In the room.  Catching up on some work and emails that I have gotten so far today.

13:45:  On my way to get my bloodwork.

13:50:  I check in for my bloodwork at the Main Building Diagnostic Center.

14:00:  They call me up asking if I am here for the bloodwork scheduled for tomorrow, It ell them that I am.

14:10:  I am called to the back.  They take 3 tubes of blood.

14:20:  All done with the blood.

14:30:  Back in the hotel room, picking back up on work.

17:00:  All done with work.  Time to head out and get something to eat.

17:15:  We head out of the room.  We head across the skywalk to the Duncan building, out the Duncan building

17:35:  On the lightrail.

18:00:  We get off the light rail and it is right at the Bombay Pizza Company.  Here they have a mixture of Italian and Indian food, an interesting combination.  I get a Lasagna, which does have some spices to it, but really good!  I also order a 12 inch pizza, thier pizza crust is real thin, pretty much their Indian bread as a crust, which gets thin and crispy when baked for an extended time and I have half the Mitul’s Masala which is Grilled Chicken, Spanish Chorizo and Mozzorella on Cumin Spiced Potato Gravy and Bombay Pizza Sauce, and the other half is the K. Renee which is Tandoori Spiced Shrimp, Fresh Crab Meat, Bell Peppers and Goat Cheese on Infused Olive Oil topped with Cilontro Mint Chutney and Fresh Cilantro.    A very good pizza!  I am stuffed after eating my pizza and lasagna.  Very good though, I’ll be back again!

19:42:  Out of the restaurant we head, we walk 2 or 3 blocks down to the next rail station to head out.

19:50:  We are on the rail heading back to MD Anderson.

20:12:  Off the light rail, we walk into the May’s Clinic, across the skywalk, through the main building, across another skywalk to the Rotary House.

20:35:  We eat our helping of Frozen Yogurt, a great dessert.

21:00:  All done with the Frozen Yogurt,  I head down stairs and print up my Spirit Airline tickets for the ride home.

21:10:  Back in the hotel room, laying in bed, working on the computer, ordering materials for upcoming projects.

22:00:  I take a nap.

23:30:  I wake up.  I walk back over the skyway to the main building to the Park which is opened 24/7 and grab some drinks.

23:55:  I am back in the hotel room back on the computer working.

23:59:  Another day done, but I am still working remotely.


07/27/2016: 26th Infusion – Week 3 – Liver Issues – 27th Infusion Cancelled

07:00:  Up I am.  I take my medicine.

07:15:  Bathroom, shower, dress.

08:00:  I apply my numbing cream to my port and put the usual saran wrap over the area.

08:05:  I get on my computer, check my emails, catch up my blog.

08:22:  All done catching up.  Time to pack up my laptop, and head down to my 08:40 fast track doctor appointment.

08:30:  Brush teeth and final packing.

08:35:  Out the hotel room heading to my quick fast track appointment doctor visit.

08:43:  I check in on the iPad on the 6th floor at the Lymphoma and Myeloma Center.

08:44:  I get a text message go to the frontdesk and get and armband and check with receptionist.

08:45:  I get called to the back for vitals.

08:50:  I am back sitting in the waiting area waiting for a PA or resident to check me to sign off on my drug/treatment.

09:22:  I am called to the back for my checkup.

09:30:  I meet with a PA and a student.  They go over the usual, questions, breathing, heart, etc.

After the checkup they start going over my lab results which are good for everything but my liver levels.

I have an ALT of 532 and am AST of 275 which are higher than they have ever been.

They are waiting for a call back from Dr. Rodriguez because she is out of town.

09:45: They come back in and tell me that they some to Emily he research nurse and that treatment for today will be withheld.  I will get additional bloodwork done to check for hepatitis and I will also get a liver ultrasound done as well to check for blockages or any other abnormalities with my liver.  They send me back out into the waiting area.

09:55:  A nurse comes out and tells me that I have an ultrasound scheduled for 13:30.  She says she will also check me in for the additional bloodwork.

10:30:  They call me to the back for my additional bloodwork.

10:42:  All done with my bloodwork.  I am heading back to the hotel room to get my wife who slept late.

10:52:  Back at the hotel room.

11:38:  Out the hotel room.

11:43: Checked out on 1st floor of temp reception.

11:45: Hitting the hallways and skyway to the May’s clinic for my Ultrasound.

12:00:  I check in on the 5th floor of the May’s clinic at the General Ultrasound.

12:50:  I am called to the back.  Karen a Ultrasound student will be taking care of me today.  She shows me to a changing room and gives me a gown to change into.  I need to remove my shirt and put on the gown.  I do that, and then she has me put my bag and valuables in a locker.  I go into room 1 and she is prepping.  I step out to use the restroom real quick and then return and lie down on the bed.

14:45:  All done with ultrasound.

15:09:  Out of MD Anderson heading to the light rail.

15:15: On the light rail.

15:35:  Off the light rail.

15:43:  On the Express 102 Bus to Bush Airport

16:35:  At the airport.

18:38: Takeoff

19:24:  Touch down.

19:55:  At my office to pick up a switch for a client that failed earlier today.  I had my friend, another computer tech, head out and replace a failed switch at a restaurant just a little less than 4 hours ago because they needed to get back online for dinner.

20:00:  Over to the restaurant we head.

20:05: At the restaurant, I replace the switch.

20:20:  We are having dinner here tonight.

21:45:  All done, heading home.

22:30: ZzZzZzZzZzZzZzZzZz…

23:59:  Another trip and day done…


26th Continuation – Liver Issues

05:00:  Up I am.

05:40:  Out the house we go.  My dad is driving my wife and I to the airport.

06:05:  At the airport we are.

06:10:  I check the airline prices for two weeks and purchase tickets.

06:20:  To security we go.

06:25:  At the security checkpoint.

06:35:  Through security.

06:40:  My wife grabs something to eat and a coffee.  I grab a diet Dr. Pepper.

07:00:  We are sitting at the gate.  The Spirit flight to Atlanta is boarding.  I open my laptop and start catching up on some things for last week in my blog and enter in my flight into Spirit’s website for printing tickets and mileage credit.  I catch up the blog, remote into a computer to check its status, check email, and catch up on a few minor things.

08:00:  The plane from Ft. Lauderdale arrives, our plane to Houston.

08:03:  The passengers deplane.  I pack up my laptop and prepare for the flight!

08:10: The boarding begins.

08:20: We are sitting in the plane in out big front seats.

08:36: Cabin door closed.

08:39: Push back.

08:45: Taxing.

08:50: Takeoff.

09:44: Touchdown.

09:54: At the gate.

09:56: Off the plane.

10:00:Bathroom break done, time to head to the skyway.

10:35:  On the bus.

10:42:  On our way.

I get a call from a client with fax/cc line issues.  After basic troubleshooting I try to call the provider.  I can’t even reach the provider as they are having telephone issues. I email a sales rep that I deal with and he confirms it is a large outage that is being worked on and should be resolved within the hour.

11:32: Off the bus.

I update my client of the providers update to me so they stop troubleshooting.

11:38:  At the light rail station.

11:43:  On the light rail.

12:13:Off the light rail.

12:18:  In the Duncan building.

12:20: The skywalk.

12:30:  I check with the hotel frontdesk the room is not ready yet.  So I give them my number.  I also check for 2 weeks and get put on the waiting list.

12:45:  I check in on the second floor of the main building at the diagnostic Center on the touch screen computer and take a seat.

13:25:  I see my name on the board and go to the front desk.  I am called by a nurse, confirm my medical record number, and am brought to the back where I am assigned a chair.  The nurse checks my left arm, does not find anything, checks my right arm, finds something on the outside of my arm and uses it with no issues.

13:40:  All done.  I go back out to the waiting room and see some emails from a client and jump into support mode attempting to resolve that issue.

14:10:  I am done helping some remote support.  I still have another text that I need to attend to, but I need to get my computer setup.  My room is still not ready, so I go grab some frozen yogurt.

14:30:  I get a text message telling me that my room is ready.

14:40:  I check in at the frontdesk and get room 406.  I think I was in this room 6 weeks ago.  I setup my laptop and get to working on client issues.  I remote into computers, forward invoice emails, and log work done for billing yesterday and today.

17:10:  All done with work.  Just quickly updating my blog.  I bet some more work to do.

18:10:  Now I am done with all the work.  Time to head out to the Bombay Indian Restaurant downtown for some Indian food.

18:25:  Out of the Duncan building to the light rail.

18:30:  Jump on the light rail headed downtown.

18:55:  The light rail station is right at the Bombay Indian Grill restaurant.  So here we are.

20:35:  All done eating.  I had a nice sampler of many things.  Bombay Feast (Serves 1) – House salad, barrah kabab, kashmiri chicken, prawn, chicken tikka masala, saag paneer, rice pulao, naan and dessert.  We jump back on the light rail heading south back to MD Anderson.

21:00:  We arrive at our stop and walk to the Mays Clinic entrance, as the Duncan Building entrance is now closed.

21:05:  Across the skywalk we head.

21:20:  We are at the park to grab some drinks and a snack and relax.

23:00:  All done relaxing, time to head back to the hotel.

23:15:  I print up our Spirit Airline tickets for tomorrow’s flight home.

23:25: I am back in the hotel room.  I hit the sack…

23:59: ZzZzZzZzZzZzZzZz…


07/13/2016: 26th Round Infusion at MD Anderson

05:30: I wake up and take my thyroid pill and drift back to sleep.

07:00: Up me is.

07:30:  Shower and prepping for the day.

08:15: My numbing cream is on my port area with my saran wrap over it.

08:30: Out the room I am.

08:40: Checkout I do.  Then over the skywalk from the hotel to the hospital I go.  Up to the 8th floor and I check in at the wound therapy clinic etc to get my port accessed.

09:05: I check in at the clinic.

09:45:  I am called to the back.  I have a new nurse doing his rotation.  First he didn’t realize that I didn’t have an ID bracelet, then the ID bracelet wasn’t me.  He then accessed my port while being supervised.

09:55: Down to the 6th floor I head to the Lymphoma and Myeloma Center.

10:05:  I check in to see Dr. Rodriguez.

10:25: I get called to the frontdesk, they tell me my appointment is not until 1:45 PM and that she doesn’t get in until 1:00.

I ask to speak to Michael my nurse as of I have to wait to 1:45 to see the doctor then I won’t be getting treatment to about 3 and I will miss my flight back to New Orleans.   The front receptionist calls Michael and asks me to have a seat and Michael will be with me shortly.

11:00:  I see Michael and tell him my situation and asks if Dr. Rodriguez can just approve the treatment or if I can see Abey the PA-C in order to get my orders approved.  He says he will check with Abey and let me know.

11:30: Michael comes back out and tells me that Abey will see me.  Michael takes my vitals.  I then move in the waiting room to the area Abey is in.

11:50:  I am called to the back.  Abey sees me and everything looks good as far as lab work is concerned.  I take this time to ask Abey about to scan results as last time the textual scan results were not present and they were strictly going off of the image of the scan.  I asked about the new spot of 5.1 SUV uptake that was showing.  He said it could be background activity or a respiratory infection or something that caused the spots on the scan to glow, but until not a relapse or significant abnormal result.  Abey said that the one that were growing a little bit had no uptake and the one with uptake was not growing.  Therefore Abey will consult with Dr. Rodriguez and see when the follow up CT scan should be to check their sizes and for me to email him to follow up with thus.

12:10:  All done with Abey.  I am told Emily will meet me in the CRTC.  Down to the second floor we head.

12:20:  I check in at the CRTC.

12:45  I am called to the back.  I get my vitals taken.

1:00:  In the room.  The nurse is checking on me.  She said she had called up for the drug to check the status and she would go grab the drug if she needed to so that things would move quicker.  I am running behind because of the times and schedule of the doctor.

13:10:  The drug makes is here as the nurse catches the runner bringing the drug down.

13:15:  My infusion starts.

14:10:  My infusion is done.  Flushing begins.

14:15:  All done, I am deaccessed.  This is one of the quickest passes through the CRTC.

14:23:  We grab some frozen yogurt.

14:44:  All done with the frozen yogurt, time to head to the rail and back to the bus to the airport.

14:50:  Through the skywalk.

14:52:  Out of the Duncan Building.

14:55:  At the light rail station.

15:00:  On the light rail.

15:25:  At Central Station

15:36:  The 102 Express bus arrives.

16:29:  At BUSH Airport.

17:30:Boarding begins.

17:55: We push back from the gate.

18:01: We pull back into the gate for a log book correction that the pilot says has to happen.

18:18: We push back again.

18:24: Taxing we start.

18:28: Takeoff

19:12: Touchdown


07/12/2016: 26th Round Infusion at MD Anderson

06:00:  Up Yoda is 

06:30:  Uncle Vic is here to pick up my mom, wife, and I.

06:52:  At the New Orleans Airport once again.

06:53: At security.

07:01:  Through security.

08:10:  Boarding begins.

08:25:  Sitting in the plane.  You can ride on the plane if you want, but I am going to ride in the plane….

08:39: Pushing back.

08:48: Takeoff.

09:45: Touchdown.

09:51:  At the gate.

09:55: Off the plane.  A quick bathroom stop.

10:00: Walking to the skyway.

10:05: On the skyway.

10:09:  Off the skyway.

10:15: Waiting at the bus stop.

10:35:  On the bus.

11:30:  Off the bus.

11:40:  On the light rail.

12:03:  Off the light rail.

12:23: I check in for diagnostic labs. A new computer system for checking in has been implemented where you just sign in on a touch screen computer using my medical record number and confirming why I am here and my cell phone for contact.

12:30:  My name code gets put up on the screen for me to see the front desk.  They say they don’t see any test for me and asked who was ordering, I told them Dr. Rodriguez or Emily Wesson the research nurse.  They find the orders on tomorrow’s schedule and tell me that they will schedule them for today,for me to have seat and my name will appear again shortly on the board.

12:33:  My name appears again on the board so I go to the door and the next nurse asks my name, finds my wristband and scans it.  Then puts it on me asking my date of birth and medical record number.  We go to the back where she scans my band again and prepares 3 tubes to be filled.  She feels both arms and then takes the blood from my left side and sends me on my way.  I get a call from a client while this is going on and send it to voicemail.

12:45:  I am done with the blood draw.  I walk back to the waiting area where my wife is waiting and return the phone call.  Comes to find out, they have no internet, pages not loading, can’t upload X-ray images.  I troubleshoot with the client rebooting the modem, router, switch and restarting services on the server because I can’t log in to check things out.  I call the ISP and there is an outage in the area. Some very low bandwidth services/static routes are working but all dns and new routes are not.  There is an ISP tech working on the issue.  I check on the VOIP services for the client and that is still operational over their internet.

13:45:  All done troubleshooting for the client, time to go try checking into the hotel.

14:00:  The hotel has a cancellation for a double queen so I take it and cancel the queen suite that they had reserved earlier that day for me as this is $40 cheaper and falls into the study allotment for a hotel stay where the suite price did not.  However the double queen is not yet ready.  So I will return.

14:20:  I find my wife and my mom browsing the gift shop.  I pick out a shirt or two.

14:35:  We grab some frozen yogurt from the area.

15:00:  I try to go check in again and still not ready.

15:25: I go back to check in and the room is ready.  We get room 905.

16:00:  I talk to my cousin Keith who lives in the Houston area about some BBQ that is accessible via public transit, he recommends Pappas BBQ.

16:15:  We leave the room and head ba k across the skywalk to the light rail.

17:00:  Off the light rail and walk 3 blocks to Pappas BBQ.

17:15:  I order the combo rib platter.  1 beef rib, 2 pork ribs, 3 baby back ribs, mac and cheese, and potato salad.  Pretty good.

18:03:  All done with dinner back 2 blocks to the light rail heading south on the red line back to MD Anderson.

18:45:  Back across the skywalk to the hotel room.

19:00:  I find that my server is offline.  I try to do some trouble shooting, but not much I can do remotely.

19:15: I ask my dad if he can go over to the office to check things out.

19:30:  My dad is at the office.  We start troubleshooting.  I find a switch offline when I cannot get into it to check the configuration and I can’t ping it.  I have him check it.  To speed up the process I do a Google Hangout video call with him.  I see the switch but it is completely off.  I have him check the electrical wires, everything is plugged in.  The switch is dead.  I remote into another switch and check it’s availability.  I have him physically check this as well.  We find 3 ports available and I configure them to host the vlans needed for those servers to properly function on the network.  I have him move three wires one at a time from specific ports on the dead switch to specific ports on the other switch that is functioning and check for their online status to come back up.  All three servers come back online and everything is functioning at my office again thanks to my dads remote eyes and hands at the office while I worked remotely from my hotel room at the rotary house at MD Anderson.

20:30:  My wife and I head down to get some more frozen yogurt.

20:40:  Some more delicious frozen yogurt, the cookies and cream flavor.

21:00:  They shut down the frozen yogurt stand on schedule.  We finish our frozen yogurt.

21:15:  Over to the park we head.

21:30:  At the park, in the main building of MD Anderson on the 2nd floor.  I order a small personal pizza and my wife a burger and we just hangout and talk.

23:00:  All done at the park we head back over to the hotel.

23:15: We are back at the hotel room.  I jump on my laptop and check into a few more things that I had clients email me about.  I recover some deleted files from a backup, get a voip phone back online, and do some follow go billing.

23:59:  All done with client items.  Time to go to sleep…  ZzZzZzZzZz…..


06/29/2016: PET Scan Results and 25th Infusion @MD Anderson

07:00: Up I am.  Shower I get.

07:30: Done the cleaning process aka shower. I apply my numbing cream for my port access.

08:00: All packed up. I head downstairs to the first floor, take the detour outside and back inside and to the business center and print out the boarding passes for the plane ride home.

08:30: Back outside and back inside to get to the elevator to the second floor then detour to another elevator to head back down to the 1st floor in the same building to check out then back up the elevator to then walk past the same elevators thug we were just at to walk through the restaurant to get to the skywalk to walk through the main building then up elevator C to floor 8.

08:55:  I check in at infusion therapy to get my port accessed.

09:30: I get called to the back.

09:40:  All done getting accessed.  Down to the 6th floor for Dr. Rodriguez’s appointment.

09:47:  My wife checks me in on the iPad at the Lymphoma and My3loma clinic.

09:48:  I get texted to go to the front desk to check my arm band and get my paperwork.

10:00: I get texted to go to the Hibiscus hallway for my vitals.

10:10:  Micheal comes and gets me and brings me to the back.

10:15:  Abbey comes in and starts going over the PET/CT scan.  Everything looks good but a spot in my right upper gum/cheek area.  Not sure if it is an infection or an abyss, or what it is.  I am thinking I remember something happened to my mouth but can’t remember exactly what.  Then it comes back to me, a week ago on Tuesday night I was at Buffalo Wild Wings and had ordered Potato Wedges.  I had put a potato wedge in my mouth and it was still super hot and got wedged in the top right of my mouth between my gum and cheek and burned.  I was out of drink and was unable to simply stop the burn.  Now that area is showing some irritation and showing increased uptake on the PET/CT scan.  So that spot on the scan is a result of a burn a week ago.  Other than that, my scan is again completely clean with no issues!  Another clean scan 🙂  No better news than that.

We discuss other possibilities such as if the transplant is still the next step, or if we should prolong the nivolumab while new advancements are being made.  There is a process where they are taking T cells from B Cell Lymphoma patients and boosting these T cells to recognize the cancer cells and attack them and then inject these empowered T cells back into the the patients body and have the T cells take care of the patient.  So that may be a possibility as well.  There is not a study for that and not for the Nodular Sclerosis Hodgkin’s Lymphoma that I have, but it is possible that there could be something like this coming soon, and this would possibly be a better option than another stem cell transplant, but only time will tell!

Dr. Rodriguez comes in next and she is happy with the results as well.  She feels my mouth and my cheek and nothing hurts, but she does see the irritation inside.  Nothing definitive and to do so, I would need to go see my dentist again and get some more xrays to confirm an absyss or infection or burn, etc.

Emily catches us in the hall as we are leaving and gives me my next 2 weeks of study side effects paperwork to complete, and collects my current 2 weeks paperwork.

10:50: I check in on the second floor at the CRTC.

11:05: I am called to the back. I get my vitals taken.

11:10: I am assigned room 9.

11:50: My medicine arrives. It is verified by another nurse. The drug is then hooked up.

12:00: Infusion begins.

12:30: Lunch is served. My usual, soup, turkey and American cheese sandwich, some fruit, chips, cookies, tea, and a diet Dr. Pepper.

12:50: My wife leaves to go grab a bite to eat from the MD Anderson Cafe.

13:00: Infusion of my nivolumab is complete. Flushing the line begins.

13:10: I am deaccessed.

18:00: Sitting in the plane.

18:10: The door is closed.

18:14: Pushing back. See you in New Orleans.

18:29: Takeoff.

17:19:  Touchdown.



06/28/2016: PET Scan @MD Anderson

06:00:  Up I am.

06:30: Uncle vic pics up my mom, wife and I.  My dad has work…

06:53: At the airport.

07:00: Our bags get pulled to the side going through tea. Just too much mouthwash in mine and toothpaste too large in my wife’s bag.

07:05: Through security.

07:42: I get an email from Spirit saying our gate has changed to C4. We move from C5 where we were waiting for C6 to clear out but that spirit flight to Atlanta had been delayed. Therefore our gate has been reassigned.

07:59: The plane from Ft. Lauderdale arrives at C4.


08:10: Boarding now.

08:20: Sitting in the plane.

08:37: Door closed.

08:38: Pushing back.

08:42: Taxing, airplane mode on now, see you in Houston.

09:36: Touchdown.

09:45: At the gate.

09:50: Door open, off the plane.

10:01: On the skyway.

10:12: On the bus.

10:29:   A client calls me having issues with Quickbooks POS.  I remote in from my phone to their computer and the server and start checking out the situation.

11:00: Off the bus.

11:07:  On the light rail.

11:30:  Off the light rail.

11:35: In the Duncan Building.

11:40:  I sign in for my bloodwork.

11:55:  I resolve the quickbooks issue and call the client back, they are able to now access their Quickbooks Point of Sale.

12:08:  I am called back for my bloodwork.

12:15:  All done the bloodwork.  I head up elevators T to the 6th floor.

12:20:  I check in at the PET/CT Imaging area.

12:25.  I hook up my laptop and continue some remote support that I started last night.  I step the client through a few steps, now we just need to wait on the computer to complete some repairs.  I tell John to call me back after the computer is done repairing.

12:45:  Catching up the blog.  Waiting on them to call me back.

14:00: I am called back for my scan. I give my wife my phone, watch, medical chain as I can’t really have anything in the back. They have me use the restroom, then I am assigned room 15. I am then given a 32oz contrast to drink. I am told to drink 3/4 of the drink and save the last 1/4 for before the scan. They come access my arm and test the iv with a few flushes. This will be used for the radioactive glucose and the iodine contrast. I am then given the radioactive glucose, lights turned off, lighted picture turned on.

I take a nap.

They come and get me and bring me to use the restroom again. They have me drink the rest of my drink and then bring me to the back. They have me lay down on the table, put my feet up, put a knee pillow under my knees to keep my back flat on the table and my neck on a padded rest and then into the machine they slide me. He then meets me on the other side of the machine and hooks up the iodine line to my iv. Then he slides me back through the machine to start the scan. The machine first takes a quick CT image without contrast. I then go through and get another CT scan again with the contrast. Then the PET scan starts.
Once the PET/CT scan is done they take out the iv and send me on my way.

16:00: I am out of the PET/CT area, back by my wife who is waiting. I fix some settings on my moms phone and do some updates on my wife’s phone.

16:45: All done in the may’s clinic. We walk over the skyway to the rotary house through the detour and I check in, back through the detour and to our room, 833.

17:15: In the room. Spread out get what we need, and then out we head.

17:40: Getting some frozen yogurt.


06/15/2016: 24th Round Infusion at MD Anderson

00:00: Still at the park eating my Pizza.

00:15: All done with my two slices of Pizza, back to my hotel room I head with my left over pizza and sodas for breakfast.

00:30:  I am back at the hotel room. I tell my wife what I ate and she is wanting some, so back over to the park we head.

00:40:  Back in the park she orders her midnight snack.

01:05:  Back at the hotel room.  ZzZzZzZzZzZ

07:00:  My alarm goes off and up I am.  Shower and getting ready.  Only bad thing about the shower is that it goes down too slow and fills up.  New construction/renovations and this is already happening?

08:00:  I finish putting on my numbing cream.  I jump on my laptop to catch up my blog.

08:35:  All done catching up my blog.  I still got about 25 more minutes to wait on my numbing cream.  I finish my pizza and back my bag.

08:55: I am going to head downstairs and go print up my boarding passes for the flight home this evening.

09:05: Boarding passes printed.

09:10: Teeth brushed.

09:15: Heading over to get my port accessed while my wife gets ready.

09:19: I sign in to get my port accessed.

09:24: They call my name to put on my wristband.

09:50: I am called to the back.

10:00: All done. Heading back to the hotel to get my bag, pick up my wife and check out before heading to my doctors appointment.

10:10: I am back in the hotel room. Everything packed and ready to go. We head out.

10:15: It takes 5 minutes waiting for the elevator. The elevators are overwhelmed in the hotel because of the constructions and having to use a series of elevators to get to the check in desk and the business center and other locations so they are being used more frequently to serve as detours for different points of access since walls have been constructed blocking off hallways leading to construction areas.

10:20: I check out then head over to the main building through the restaurant across the skyway up elevator B to the sixth floor.

10:30: I check in on the iPad.

10:34: I get called to check my wristband and get paperwork to fill out. I sit down to fill out the paperwork and get called to get my vitals so vitals, and then I sit back down start filling out the paperwork and get called to go back for my appointment by the nurse.

10:40:The nurse goes over everything.

10:49: Abby comes in and goes over things. He suggests seeing an endocrinologist.  He wants me to see one locally since they are acustom to the study drug.  I tell him that I would rather see a local one.  I have had enough issues with insurance and getting approvals for simple doctor visits here and it has been a never ending battle over money with the hospital and insurance.  I would rather just get the pill to try it and be done with it.  He didn’t realize the issues I was having and said yeah a local one would probably be better or just try the drug that Dr. Rodriguez suggested and see where that leads.  Emily comes in during the visit and she says that the drug that Dr. Rodriguez had mentioned was Cytomel.  Emily confirms the issues that I have been having with the insurance company as well, so just trying the drug wouldn’t be too bad and forgo the endocrinologist at the moment to get the one level back in line and Abby agrees.  Emily picks up the symptoms follow up paperwork that I fill out everyday and gives me a new blank packet to fill out.  I ask Emily about the reimbursement check for the study as I turned in the paperwork in January, 6 months ago, and still have not got an reimbursement check for my travels, hotel stays and food for July 2015 through December 2015.  She says that a check should have been issued, I told her that I never received one yet, and she said that she would follow up on that.

11:00:  Abby and Emily head on out and Dr. Rodriguez should be with me shortly.

11:10: Dr. Rodriguez shows up and ask me if I have any symptoms, I tell her no, she said no news and boring news is good when it comes to a chemo and a study drug.  I ask her about the drug that she had mentioned and she said yes she could try that.  I told her I was mentioning it to Abby and she said we could try it.  I told her that I would like to try it before seeing an endocrinologist because of all the hassle that the insurance company has been giving me and all the hassle that I have been having with MD Anderson’s billing department and wanting to send me to collections and just the stupidty surrounding the financial side of things when Blue Cross and Blue shield tells me that it is covered and billing keeps telling me that the claim was denied or pushed to out of network and then just leave it and I tell them that no it is in network and they have to keep following up with Blue Cross and Blue Shield to get paid and get the particular claim filed as in network and covered.  Blue Cross and Blue Shield of Louisiana is not directly affiliated with MD Anderson, but Blue Cross and Blue Shield of Texas is, and through that underlying connection my Blue Cross and Blue Shield of Louisiana is covered as in network with MD Anderson and the referral letter from Dr. Safah and the procedure of getting seen at MD Anderson has all made it possible for me to be in network with MD Anderson.  Problem is that there is no simple way of making me in network as far as the computer system is concerned and every claim has to be manually approved and followed up with.  This is where I feel that MD Anderson billing is not following up with all the claims to get them paid and just forwarding me the bills after the first denial and not following up further.  So back and forth I have gone.  Dr. Rodriguez says she is sorry that I am going through all that but she understand me not wanting to see any one else at MD Anderson because of the insurance and payment issues and that nonsense, so she will get that medicine into my Pharmacy so that I can start taking it.  I just need to watch for side effects like heart palpitations and heart racing and if I come across that, then I should stop the medicine and let her know.  With that we wrap up the appointment.

11:20: We head down to the second floor and I check in at CRTC.

11:50:  We get called to the back and get get my vitals taken.

11:55: I go to room 8 and get comfy.

12:40:  I get my vitals taken again, with 02, walk around, get my vitals taken again with 02 again.

12:45:  My medicine is hung and ready to go.

12:50:  The nurse gets another nurse to confirm the drug and me and everything matches before starting the drug.  The nurse come in and confirms.

13:50: Finished drug.

14:00: Finished flush.

14:15: Deaccessed

14:25: I start helping a client remotely while heeding to get some froyo.

14:40: At froyo but still helping client via telephone.

14:50: Done helping client. I grab some froyo.

15:00: Done the froyo. Time to head out. Over the skywalk we head.

15:10: Out of the Duncan building.

15:15: On the light rail.

15:31: Off the light rail.

15:36: On the 102 bus headed to the airport.

16:41: At the airport.

17:45: Sitting on the plane in the big front seats.

18:00: Cabin door closed about to push back. 49 minutes to New Orleans. We will be traveling at less than 23% the speed of sound.

18:03: Pushing back. See you in New Orleans.

18:15: Take off.

19:06: Touchdown.


06/14/2016: 24th Round Infusion at MD Anderson


05:00:  Up we are.

05:30: On our way to the airport.  My dad is dropping my wife and I off at the airport.

05:45:  At the airport.

05:50:  In the TSA line.

06:10:  Through TSA.

06:15:  Sitting across from gate C6 waiting for the Spirit flight to Atlanta to take off before moving to my gate.

07:35: We move to the gate.

08:05: Boarding begins.

08:10: Sitting on the plane. Big front seats row 3 today.

08:48: Doors closed.

08:51: Pushing back. See you in Houston.

09:05: Takeoff.

09:55: Touchdown.

10:18: Getting on the skyway.

10:21: Off the skyway.

10:25: At the bus stop.

10:41: On the 102 Express Bus.

10:46: Leaving the airport.

11:45: Off the bus.

11:51: At the lightrail station

12:02: On the light rail.

12:34: Off the light rail at the end of the line at Fanin South.

12:47: Onto the 73 bus to Hobby Airport to check it out for two weeks when my dad flies into hobby airport after work so he can be here on Wednesday for my scan results

13:15: At Hobby Airport. We go walk around to get familiar with the lobby so I can meet my dad in two weeks when he comes in through hobby.

13:30: All done, back in the 73 bus back to the fanin south transit center to catch the light rail back to MD Anderson.

14:05: Off the 73 bus.

14:07: On the light rail.

14:18: Off the lightrail. Rushing to get my hotel room so no can get a client back up who said they had a real bad thunderstorm and lighting struck close to the building and they came out unscathed except for one phone, computer, and printer that doesn’t have network connectivity. This client had a direct hit 4 years ago=

14:30: I check in at the front desk which is relocated to another part of the hotel because the hotel is undergoing renovations.

14:45: In the hotel room. I get all setup and start checking things and able to eventually walk them through resolving the issue.

15:45: All done with the tech work. Time to go get my bloodwork done. I head over to the main building and go to the diagnostic center on the second floor.

16:00: I check in.

16:05: I am called to the back.

16:20: All done with the bloodwork.

16:30: Back in the hotel room. Catch up on some emails.

17:15: Out to dinner we head.

17:20: We stop for some froyo.

17:30: Out back to the city we head.

17:45: Leaving the Duncan building.

17:55: On the lightrail.

18:23: Off the light rail.

18:30: We head into SpringBOK. I get there wild boar sloppy Joe.

19:30:  Food was great and we are stuffed. My wife and I take a walk down Main street for about 5 blocks checking out eateries for future visits.

19:45:  We jump on the light rail and head back to MD Anderson.

20:20:  We are back at MD Anderson and grab some FroYo.

21:00:  Back in the hotel room.  I jump on a few things that need to be taken care of remotely.

23:30:  I head downstairs but can’t access the skyway because they have locked the restaurant and since parts of the hotel are under construction the skyway is directly inaccessible, so I go to the frontdesk and tell me I can walk to the parking garage and then go to the 4th floor of the parking garage to access the second level on the other side of the restaurant which is the skyway and access the main building from there, or if I want I can walk across the street and enter through the main doors.  I opt to enter through the main doors as it is a more direct route.

23:45:  I am in the park.  They have chicken fried steak, country gravy and I choose the red mashed potatoes as my side.  It is lunchtime for the night staff, and this is one of their choices of meal for the night shift that begins to be served around 23:30.  It’s better than our normal spin on hospital food too.  I take that and a few Diet Dr. Peppers.

23:55: I order a small personal pepperoni pizza.  I will eat two slices and will save the other two for breakfast.

23:59:  Enjoying my pizza.


06/01/2016: 23rd Round Infusion at MD Anderson

07:00:  Up and into shower.

07:30:  Some left over pizza from last night out the fridge for breakfast.

08:00:  I had a client with some issues yesterday with internet at their office.  I start following up with that.

08:45:  I am done resolving those issues, just a loose power cable probably from the client doing some troubleshooting yesterday, but the real problem was that the ISP had gone down and not a local issue, so just an issue caused by the troubleshooting.

08:55:  Down to go grab some change for the housekeepers before heading off to appointments.

09:00:  I run into a housekeeper on the way down and I just have them break my $10.

09:05:  I go back in my room and put on my Lidocane cream. Wake my wife and she gets our stuff ready.

09:10:  I fill out my diary for the study and also check on a few emails that come in.

09:40:  Packing up my laptop and about to head out of the room.

10:00: Checked out the hotel.

10:13: My wife checks me in on the iPad on the wall.

10:16:  I get a text message to go to the frontdesk to get my wristbank.  I also get some paperwork to fill out.

10:20:  I get a text message to go get my vitals taken.

10:30:  I get called to the back by Michael and he reviews how I have been.  A fever of 99.6 and stomach bug on Friday which carried over to the weekend for recovery.

10:45: Abby comes and checks on me and goes over everything.

11:00: Dr. Rodriguez comes and checks on me.  Besides the gaestro bug she called it, everything else seems fine.

11:30:  Abby comes back and tells me Emily will catch me in CRTC.

11:45:  I got up to the 8th floor and check in at infusion therapy to get my port accessed.

11:50: I go and check in down on the 2nd floor at CRTC for my infusion, and then head back up to the 8th floor to wait to get accessed.

12:15: I get called to the back to get accessed.  Then I head down to the 2nd floor.

12:30: I get called to the back.

12:50:  I get hooked up.

13:05: My treatment starts.

14:05:  My drug finishes and the flush begins.

14:15: Flush is done.

14:17: Deaccessed.

14:20: Packing up the computer about to head out.

14:40: Bathroom and froyo break.

15:08: Out we head.

15:17: Out the Duncan building.

15:21: We miss the first train approaching as we walk up because my wife didn’t have her day pass ready.

15:24: We jump on the next light rail train.

15:47: Off the light rail.

15:49: At the bus stop.

15:51: On the bus.

16:45: Off the bus.

16:50: At TSA

17:00: Through TSA.

17:05: At the skyway.

17:07: On the skyway.

17:11: Off the skyway.

17:20: Sitting at the gate. Storming outside.

18:01: Sitting on the plane in out big front seat.

18:18: Closing the front door. About to push back.

18:20: Doors closed.

18:21: Pushing back now. See you in New Orleans.

18:26: Captain says we are going to do a reroute because of the weather in Houston. We will sit here for 10 minutes while the reroute is being done.

18:34: Rerouted and cleared to taxi. See you in New Orleans.

18:47: Takeoff

19:36: Touchdown.


05/31/2016: 23rd Round Infusion at MD Anderson

05:00:  Up

05:15: Wake the Wife.

05:36:  Out the house.

06:51:  My dad drops my wife and I off at the airport.

05:59:  Through the security checkpoint.  No line at all.

06:05:  Just aimlessly walking around.

06:10:  Sitting at gate C7 across from C6 waiting for the 7:35 Spirit flight to Atlanta to board so I can sit at C6.

07:35: The Atlanta flight back away from the gate.

08:05: Our plane from Fort Lauderdale pulls in.

08:10: Boarding begins.

08:21: Seated in my big front seat on the plane.

08:40: About to push back.

08:42: Pushing back. See you in Houston.

08:51: Take Off.

09:40: Touch down.

09:45: Waiting for our gate to open up. 3 Spirit planes sitting at the three gates in Houston.

10:20: We pull up to the gate.

10:22: Off the plane.

10:29: On the skyway.

10:33: Off the skyway.

10:37: At the bus stop.

10:42: On the bus.

11:33: Off the bus.

11:38: At the light rail station.

11:45: On the light rail.

12:08: Off the light rail.

12:14: In the Duncan building.

12:25: I try to check in but they do not have my reservation. I show them the reservation email and they said there was an issue with the reservation, but they would correct it and I would have a room tonight. They said they would call me back when my room became available. In the meantime I head to the main building to get my blood work done.

12:47: I fill out my check in paper at the diagnostic center.

12:53: I get called to the back. 2 sticks by the first nurse, no luck, left anticubical area and left hand. I get a second nurse and she gets me the first time in the right outer anticubical.

13:14: All done being stuck.

14:40: I check in at the hotel front desk and get my room. Now I am going to go relax on the light rail.

15:30: We get on the light rail heading south.  We only have like 3 or 4 more stops to check out heading south before the end of the line.

15:45:  At the end of the line.  We turn around and head north on the red line all the way to the other end.

16:50:  We are at the North end of the red line, we turn around again and head south back into town.

17:30:  Back in town.  We get off and walk around checking out different places.

18:10:  Back on the light rail heading back to MD Anderson.  I have a few places in mind for next time, just tired now.

18:40:  Back at MD Anderson.  Back and forth with a client most of the way back.

19:20:  I get done helping the client, now time to go eat.

19:30:  At the new restaurant at MD Anderson called Apicius which replace The Oaks.

20:30:  Done with the buffet which was pretty good.  An oriental spin on things.  Their chicken had to be the best.

20:45:  We go grab some froyo.  Good as always.

21:30:  Print the plane tickets for tomorrows flight home at the new business center.  The renovations around here are really nice.

22:00: We walk over to the park.  I grab a small Pizza and a few bottles of drink.

23:30:  Back in the hotel room and fall fast asleep!


05/18/2016: 22nd Round Infusion at MD Anderson

03:30:  Up and about.

03:55:  Out the house.  My dad driving my wife and I.

04:10:  At the airport.

04:27:  Through security.

04:30:  Sitting at gate D6 across from D5, our gate.

04:31:  The crew load the plane.  10 minutes to boarding.

04:40: Boarding begins.

04:44: I am in my seat in the plane.

05:03: Door closing. About to push back.

05:13: Pushing back. See you in Houston.

05:24: Take off.

06:12: Touchdown.

06:20: At the gate.

06:26: Off the plane. Walking from gate E-11 to terminal C to catch the 102 Bus.

06:35: At the baggage claim area downstairs in terminal C’s bathroom for a bathroom break and putting on my lidocaine numbing cream.

06:38: Waiting at the bus stop.

06:50: On the 102 express bus from the airport to downtown.

07:47: Off the express bus. Walking to the light rail.

07:50: Scan our day passes before entering the station platform.

07:57: The train arrives and on we hop.

08:18: Off the light rail. Heading to Duncan building.

08:24: Off the elevator walking over to the may’s clinic.

08:25: I check in at the Diagnostic Center.

08:43: I am called to the back.

08:50: All done. Heading over the skywalk to the main building.

09:00: I check in at the infusion therapy clinic to get my port accessed.

09:26: I am called to the back to get my port accessed.

09:31: All accessed. Heading down to the sixth floor for my doctors appointment.

09:36: I check in at the Lymphoma Center.

09:39: I get called to the back for vitals.

09:44: All done with vitals.

9:50: Michael comes and gets us from the waiting area. We go back to the exam room. Usual medical review, medicines, symptoms, etc. Michael then goes and let’s the doctor and nurse know I am here.

10:35: Dr. Rodriguez and Emily come in. Bloodwork is in and numbers are good. A quick examination is done and everything is good to go for the next treatment. Dr. Rodriguez told me that the drug nivolumab/opdivo just became approved by the FDA yesterday for treatment of Hodgkin’s Lymphoma.

10:51: I head down to the second floor to the Clinical and Translational Research Center.

10:55: I check in for my treatment.

11:15: I am called to the back. Vitals taken. I am assigned room 7. I go put my stuff down and then go back for a follow up oxygenation/pulse ox test.

12:30: My drug is dripping into me.

13:30: All done with the drug, flushing starts.

13:40: I am deaccessed. I finish up some work and bathroom break.

14:15: Done here, packed up, heading back to the light rail station.

14:32: Out of the Duncan building heading to the light rail.

14:37: At the light rail station.

14:40: On the light rail.

15:02: Off the light rail.

15:15: On the 102 express bus to the airport.

16:09: Off the bus. At the airport.

16:15: In the TSA line.

16:38: Through TSA.

16:39: Heading up to the skyway.

16:41: On the skyway.

16:58: Off the skyway after some joy riding from C to A then A to D/E then D/E back to A.

17:50: Boarding begins.

18:00: We are on the plane.

18:30: Pushing back. See you in New Orleans.

18:42: Takeoff.

19:27: Touchdown – Taxing to the gate.


05/04/2016: 21st Round Infusion at MD Anderson

03:30:  Up I am.

03:55:  In the car on the way to the airport, my dad driving and my wife tagging along to drop me off.

04:10: At the airport.

04:20:  Through security.

04:24: Sitting at the gate, updating the blog.

04:35: They announce we will be boarding in 5 minutes.

04:38: Boarding begins.

04:41: Group 3 is called, time for me to board.

04:45: I am sitting in my seat on the plane. A change of aircraft. I notice this after I am looking for my row, the 3rd to last from back is now the 6th row from the back. I have to walk back a few rows to the front of the plane to grab my seat.

05:08: Boarding complete. Cabin door closed.

05:14: Push back. See you in Houston.

05:18: Take off.

06:16: Touchdown.

06:32: Off the plane.

06:37: Bathroom break and lidocane cream application.

06:43: All done with that, heading to the bus stop.

06:45: At the bus stop.

06:52: The 102 bus pulls up and on I get.

08:01: Off the bus, heading to the light rail station.

08:05: At the light rail station.

08:11: On the light rail.

08:35: Off the lights rail. Walking to the Duncan Building to get inside the complex.

08:39: Off the elevator, on the second floor, on the way to check in at the May’s clinic diagnostic center for blood work.

08:41: Check in at the diagnostic Center and take my seat.

08:53: I am called to the back and get my blood taken.

09:03: Done with the vampire.

09:05: On the skyway walking to the the wound care clinic to get my port accessed.

09:12: I check in the infusion therapy clinic. This clinic goes by 4 names.

09:34: I get called to the back to get accessed.

09:41: All done being accessed, heading down to the sixth floor for my doctor visit.

09:44: I check in on the iPad.

09:50: I go to the frontdesk to get my armband.

09:51: I get my vitals taken.

09:54: Sitting in the waiting area.

09:56: Michael comes and gets me and we head to the back and go over any changes which there are none.

10:10: Abey comes and sees me, everything is looking great.

10:15: Dr. Rodriguez comes in and checks me. Everything good as always.

10:26: All done with the doctor visit. Abey told me the research nurse would meet me downstairs sometime during my infusion. So down to the second floor I head.

10:30: I check in at the Clinical and Translational Research Veterans take my seat in the waiting area and wait…

10:50: I am called back to get my vitals taken again and I am assigned room 9.

11:00: I put my stuff in my room, bathroom break, and then setup my laptop.

11:15: The nurse hooks up my line, while she is doing this, the research nurse comes and gets my paperwork for the side effects of the drug, and gives me my next two weeks of papers to fill out.

11:20:  Just updating the blog, waiting for my drug to be prepped and brought tot he room.

12:25:  My drug is hung and pumping has started…

13:25: Done my drug infusion. Flushing the line.

13:35: Done flushing.

13:45: Deaccessed.

14:10: Packing Up and Heading Out!

14:14: Bathroom break.

14:16: On my way across the skyway to the may’s clinic and Duncan building.

14:25: Out of the Duncan building, walking back to the light rail station.

14:30: I arrive at the light rail station just as the light rail is pulling up. I tap the back of my bag to the card reader to pay my fare with my day pass and jump right on the train.

14:55: Off the light rail, walking to the bus station. According to the text schedule update should be about 20 minutes to the next bus.

14:58: At the bus stop.

15:18: The bus is here. Scan the day pass and get on the bus. Free ride since after 3 rides, all rides for the remainder of the day is free with the day pass.

16:10: At the airport.

16:13: In the TSA line.

16:28: Through security.

16:30: On the skyway.

16:34: Off the skyway.

16:38: I purchase a diet coke for the plane ride and for my pills I need to take.

16:43: Bathroom break.

16:45: Sitting at the gate.

17:40: Boarding begins.

17:45: I am sitting on the plane in my big 1A seat.

18:05: Just waiting for them to close the door. I am on the flight with Bobby. Hebert’s parents. They are in 1D & 1F.

18:07: Door closed.

18:08: Push back.

18:12: Taxing. See you in New Orleans.

18:34: After taxing all the way around the airport for a northward take off, we hit the runway and take off, doing a 270 degree left hand turn to head east.

19:20: Touchdown.

19:32: Off the plane.


04/20/2016: 20th Round Infusion at MD Anderson

07:11:  I am up.  Shower and normal morning routine.

08:15:  Numbing cream on.

08:28: Check out.

08:33:  I check in with the Lymphoma and Myeloma  center.

08:38:  I get called to the frontdesk for my armband, then back to my seat.  Another patient around me is starting a trial.  Not my trial but a trial.  We go over history and possibilities.  He is fighting 2 cancers at the same time and conventional therapy is not doing it’s job for remission for a stem cell transplant so he is here at MD Anderson for a trial drug,  just as I am.

09:04:  I am called to the back for vitals.

09:11:  Back in the waiting room.

09:15: I get called to the back.  A PA comes right in and goes over my labs and checks me out.  All good.  Some labs have even improved such as my liver function and thyroid levels.  Emily comes in, takes my paperwork and give me my new paperwork.

09:25: All is done here, time to head to get my port accessed.

09:30:  I check in at infusion therapy.

09:45: I am called to the back

09:57: All accessed. Down to the second floor.

10:00: I check in at the Clinical and Translational Research Center.

11:20: I am called to the back, they take vitals, I am assigned to room 7.

12:05: I have my oxygen level taken, have to walk around the unit and then have my oxygen level taken again.  Waiting on my drug to arrive.

12:30:  My drug is hung and pumping.

13:30: All done with my infusion.

13:40: Deaccesed.

13:50: All packed up.

13:55: Bathroom break

14:00: On the skybridge heading from the main building to the may’s clinic and Duncan building to walk to the light rail station.

14:07: I spot this on top of a hospital when walking the sky bridge.

14:15: Out of the Duncan Building heading to the light rail.

14:18: At light rail station.

14:20: On the rail.

14:41: Off the light rail. Light drizzle, walking to the bus stop.

14:44: At the bus stop

14:45: I send a text message to the number on the stop and get back this.

259/O @ 3:05/SC
249/I @ 3:12/RT
102/O @ 3:16/RT; 3:38/SC
255/O @ 3:16/RT
257/O @ 3:26/RT

The next bus will be here at 3:16, but that’s off because that’s 30 minutes away and the bus runs every 30.

14:46: The bus pulls up, on I jump, scan my day pass through my bag and wallet and take my seat.

14:50: On the HOV lane on I-45.

15:15: Passing through Greenspoint. They flooded Monday. Nothing was outside today. However today carpet, chairs, sofas, everything stacked in front of apartments going through the area on the Airport Express 102 normal route.

15:34: At the airport.

15:45: Through security. The agent wanted to make me go back and get a ticket that would scan. I told him Spirit tickets won’t scan. He told me they would. I asked him to call a supervisor. He did. The supervisor had to inform him Spirit tickets won’t scan and that they have to be checked my hand. I was then let through.

15:47: On the skyway.

15:51: Off the skyway.

16:00: At the gate after grabbing a drink.

18:10: Zone 2 boards.

18:12: In my 1A Big Front Seat on the plane.



18:27: Boarding complete.

18:30: Preparing for push back going into airplane mode. See you in New Orleans.

18:37: Pushing back.

18:41: Taxing.

18:47: Takeoff.

18:35: Touchdown.

18:43: Off the plane.


04/19/2016: 20th Round Infusion at MD Anderson


05:45:  Up and going.

06:15: Out of the house.  My dad is dropping me off on his way to work.  I just have to figure out what is going on in Houston once I get there since half the city is closed due to flooding from over 12 inches of rain they got yesterday.  The airport even closed yesterday, so I am expecting a full flight today due with people making up their flights that got cancelled yesterday.

06:35: At the airport.  After waiting to see what Dr. Safah wanted to do locally in New Orleans for my transplant, I didn’t want to book a flight if my last treatment was going to be the last treatment that I was going to have.  The tentative plan was to have my transplant in June, and now the plan is to have my transplant in September with my last treatment being at the end of June.  I have to leave today, as my normal 5:15 AM United Airlines flight tomorrow morning is completely booked for tomorrow.  So I am flying Spirit Airlines.  Spirit’s flight used to be at 9:50 AM, they moved the flight up an our to 8:50AM.  I’ll have my big front seat coming and going.

07:00: Through security.  I take a walk around the terminal browsing the different restaurants and shops since I have plenty of time to kill and the Spirit flight to Atlanta is just boarding, so the gate area is full and no where to sit just yet.

07:20:  I take my seat at Gate C6 as usual.

07:30: On my laptop.  Updating my blog for today, and catching up on other things while I wait.

08:08:  My plane arrives from Ft. Lauderdale

08:19: Boarding the plane.

08:22: Sitting on my front window seat on the plane.

08:42: Boarding complete.

08:47: Pushing back. Putting phone into airplane mode. See you in Houston.

08:54: Takeoff.

09:50: Touchdown, landed. There is a parking lot of united airplanes next to the runway. Probably flights that flew in and their outbound flights were cancelled because of the airport being closed because of the bad weather. Interesting site.

09:55: Taxing to the gate. All three gates have planes parked and one spirit plane just sitting here probably from yesterday.

10:23: Finally at the gate. The weather is great, just delays cascading over from yesterday at the airport.

10:26: Off the plane. Bathroom break.

Going to get on my laptop and check a few things before heading to the Bus Stop for the express 102 airport bus to downtown.

11:09: On the skyway.

11:12: At Terminal C.

11:14: Sitting at the bus stop.

11:34: On the 102 bus.


12:25:  Off the 102 Express Bus.  I call the hotel and reserve my room because they had a cancellation.

12:40:  I get on the light rail heading south towards MD Anderson.

13:05: Off the light rail. Walking to the Duncan Building.

13:10: On the second floor of the Duncan Building, heading to the skybridge.

13:20: Checking in at the frontdesk of the Rotary House.

13:25: In my room, I setup my laptop to catch up on a few things including my blog.

13:58:  All done catching up.  I am starving, I am going to go grab something to eat.

14:00: Just before I leave my room, I get an email from a client. I sit down and take care of their issues

15:05: I go take a walk to find something to eat. I realize that if I don’t have an armband I can’t roam the halls at night. I am call Emily to see if I can get my blood work done today. This will do a two fold. I have not eaten anything all day and I can get an arm band as well. On top of that I won’t have to worry about wasting time on bloodwork tomorrow morning, so hopefully speed things up even more.

I go take a walk and tour the food courts deciding what I want to eat after my bloodwork.

15:25: I check in at the diagnostic center.

15:40:  I am called to the back.  They take their three vials of blood.

16:13: I am at Anderson Cafe.  I get myself a cheeseburger and a slice of pepperoni pizza, along with a 64 oz diet dr. pepper.

16:43:  I get a Peanut Butter Stack from The Park Cafe.

16:53: I get two 20oz Diet Dr. Peppers for my hotel room and return back to the room.

17:00: Back in the room.  Bathroom break and get back on the blog, and catching up on work work.

18:25:  Still working on things.

19:30: I go check the dinner buffet, not too appetizing. I go check out the lounge, too crowded. I head back upstairs and prepare documents I need to print for this back and forth fight between MD Anderson and Blue Cross and Blue Shield of Louisiana. WARNING: RANT COMING… Skip to next time stamp to skip rant… My case nurse has looked into this for me and has instructed me exactly who to contact now to get this resolved once and for all. It is a combo of both organizations fault. Now I need to put it all together for them to be able to correct things. Another 10 hours of my life to waste going over all claims for the past 10 months and reviewing what has been paid, what hasn’t been paid and detailing that. So I prep all that to print to send to Blue Cross and Blue Shield for review and reprocessing. I am covered as in network, just because MD Anderson is not in Louisiana’s direct network, I am still covered in network as Blue Cross already has a contract with MD Anderson through their Texas subsidiary and can file me under that. However it is not automatically done, so yes MD Anderson was right that they frequently have problems with cases like mine, but telling me it would work itself out and that they would work with my insurance to correct everything is something they are not doing and now something they are making me waste time on myself. After sitting down with the business center and talking to people face to face who told me they would take care of it and don’t worry about it that would work it out for me because I have enough to worry about, yeah, they never came through for me. So I’ll just print all the research up here tonight to send to Blue Cross.

20:20: I head back out to go check on the Oak Lounge. Still a little crowded but I see people finishing up. I go grab some yogurt around the corner on the second floor while I wait

20:45: Back at the Oak Lounge. I order an iced tea and a ribeye with vegetables and a baked potato. I catch up on my blog while I wait.

21:10: Blog caught up, waiting on my food.

21:20:  I get my Ribeye, vegetables, and baked potato.  Great food as always!

22:04:  All done eating.  I head back up to my room, then down to the business center to print up my airline ticket for tomorrow and to print up some of that paperwork I need to wade through to get this BCBS and MDA thing cleared up.

23:30:  Back in my room.

23:59: Going to bed.  See you in the morning!


04/06/2016: PET Scan Results and 19th Infusion @MD Anderson

07:00: Up and shower.

08:10: Out the room.

08:15: Checked out of the hotel.

08:20: I check in at the diagnostic center on the second floor of the main building.

08:30: I am called to the back. Stacie has fun searching for an access point especially after all my blue stick points from yesterday’s if sticks. She finally feels for it around and IV attempt spot from yesterday and feels something. She then takes some time moving the needle around to stick the vein. She takes the 4 tubes of blood and sends me on my way, of course not before talking about interest in New Orleans and food and questions about Bourbon Street.

08:45: All done giving blood. On my way to get my port accessed on the eighth floor.

08:48: I check in at the clinic to get my port accessed.

08:51: I get called to the back.

09:00: All accessed.

09:15: Heading downstairs to the sixth floor to the lymphoma clinic.

09:20: Checked in on the iPad.

09:26: I get a text to go to the front desk to get my new armband.

09:27: I get a text saying go to the lavender hallway to get my vitals taken. The wall is not painted lavender, just a small lavender sign. So a lavender flower, not color. All hallways are named after flowers. Who came up with that idea, it should be colors painted around a door or something that can be distinguished from a distance, small pictures of flowers by doors. Confused me. The lettered hallways were better than flower hallways, at least you could see the letter from across the room, rather than trying to make out a flower, at first I thought it was a color. Bad idea. Who came up with that idea? I hope not some high paid consultant. Rant over.

09:35: Done with vitals.

09:50: I am called to the back. Room 31. Michael goes over the normal intake questions.

10:00: A PA comes in and checks on me. She goes over everything, all labs are good and a clean pet scan. She finishes up and Emily comes in who is extremely happy with the results of the scan. Then Dr. Rodriguez comes in and sees me and she is happy with all the results as well. She is not as concerned with my cough as Emily was because I was sick 2 weeks and that is clearing up and also some allergies with me coughing. So no need for a pulmonary function test.  So far so good.  I am on treatment 19, which is 7 of 24 after complete remission.  So still moving forward with that.  Dr. Rodriguez is all done seeing me, I get a copy of my PET scan and is sent on my way to get my infusion.

10:50: I on my way to the second floor to check in at the CRTC center.

10:55:  I check in at the CTRC for my drug infusion.

11:17:  I am called to the back and my vitals are taken.  I am assigned room 8.

11:25: I am in my room.  I turn on the movie The Intern and check a few things while sitting here.

12:10: My drug is just being mixed.

13:38:  They hang my medicine.

14:38: All done my medicine. Flushing begins.

14:45: All done being flushed.

14:48: Deaccessed.

14:54: Out the room, bathroom break.

14:57: All done, hitting the skyway to walk back to the light rail.

15:06: At the Duncan building elevators.

15:10: At the corner and a train is there, but can’t get on because we need to wait for the cross walk signal to cross.

15:15: On the next light rail heading north to downtown.

15:42: Off the light rail.

15:45: Standing at the bus stop. The text alert says it will be here at 15:53. They are running every 15 minutes.

15:55: On the 102 express bus heading to the airport via the I-45 HOV lane.

16:52: At the airport.

16:55: In the TSA Security line.

17:05: Through security.

17:10: On the skyway.

17:14: Off the skyway.

17:17: At the gate. They are loading Zone 1.


17:20: On the jetway.

17:23: In the plane.

17:24: In our seats.

17:45: Door closed.

17:49: Pushing back. See you in New Orleans.

18:18: Take Off.

19:00: Touchdown, back in New Orleans.


04/05/2016: PET Scan Results and 19th Infusion @MD Anderson

07:45:  Up and shower.

08:35:  Uncle Victor picks us up and brings us to the airport.  My mom and dad and I.  My wife is staying home because she has classes.  So she will hold down the fort.

08:50: At the airport.

08:52: Past the checkpoint.

09:10: Through security.

09:11: At the gate.

09:15: Boarding starts.

09:20: We board.

09:25: Sitting in the plane.

09:38: Door closed. About to push back. See you in Houston.

09:40: Push back.

09:51: On the runway.

09:53: Takeoff.

10:45: Touchdown.

10:51: At the gate.

10:54: Off the plane. Walking to the skyway.

11:00: On the skyway.

11:04: Off the skyway.

11:11: On the bus.

12:03: Off the bus.

12:11: On the light rail.

12:33: Off the light rail at the TMC Transit Center.

12:37 In the Duncan Building.

12:45: I check in at PET.

14:00: I am called to the back. They sit me in room 7. The new system has them ask me a number of questions rather than filling out a paper questioner. They put my answers directly into the system. It takes them three tries to get the iv started and when they finally do it is in a sensitive area in my lower arm. It took two nurses to start the IV as well. They also give me a contrast to drink. The nurse returns with my radioactive glucose to inject into me and injects it. The IV is really sensitive. They leave me to drink my drink and rest while the glucose does it’s job which is about an hour.

They come and get me and bring me to the restroom and then bring me to the back.

I get scanned, CT scan first with the iodine injection which then turns into the PET scan.

16:20: All done with the scan.

16:40: We head back down Elevator T in the Mays Clinic, heading back to the Rotary House.

16:45: We hit the skyway.

16:50: Off the skyway in the Pickens Tower.

17:00:  In the Hotel Lobby.  No cancellations yet.

17:30:  We check with the receptionist again and there is a cancellation.  We take the room, checkin, and head upstairs.

17:40:  In the room. I cancel my other Hotel Reservation on my phone app at the Crowne Plaza which has a no penalty cancellation time of 6:00 PM.

18:00: We head down to get something to eat.  I like the dinner buffet, but tradition has it that I get a steak after every PET scan.  My parents take the dinner buffet as usual and I go upstairs to the Lounge where I can get my steak.

18:15:  I order my steak to go.

18:30: I get my steak and bring it downstairs to eat with my parents.

19:30: All done with dinner.

19:45: I use the business center and print up the plane tickets for tomorrow’s flight home.

20:15: Back in the hotel room.  I take a nap.

22:00:  I wake up.  Time to go get my usual small Pizza from The Park which is about a half a mile walk through the maze of hospital hallways.

23:30:  Back in the hotel room.  I take my pills, and catchup the blog.

23:59: Done catching up the blog… Goodnight…


03/26/2016: Crayfish Boil

Need I Say More?
IMAG0552 (Small) IMAG0553 (Small) IMAG0554 (Small) IMAG0555 (Small) IMAG0556 (Small) IMAG0557 (Small) IMAG0558 (Small) IMAG0559 (Small)


03/24/2016: Crescent City Classic Expo

My Dad is doing the Crescent City Classic again this year.

I just had a treatment yesterday and will not have the energy to do the full race at a full pace in 2 days, there is always next year…



03/23/2016: 18th Round Infusion at MD Anderson

03:30: Up.

03:50: Out the house.  My dad driving my wife and I.

04:07: At the airport, my wife and i jump out.

04:11:  In the TSA line.

04:34: Through security.

04:40: Boarding begins.

04:46: Seated on the plane.

05:12: Pushing back. See you in Houston.

05:20: Taxing to the north end of the North/South runway.

05:22: Takeoff.

06:14: Touchdown. Taxing to gate C40.

06:28: Off the plane.

06:32: At the first floor bathroom. I put on my numbing cream.

06:38: All done, heading out to the bus stop.

06:50: The bus pulls up. Not a city bus but their nicer charter type busses. We jump on, scan our day passes for the metro.

08:02: Off the bus. Plenty of traffic on the way in, the hov lane was even slow.

08:07: At the light rail station, scan our metro day passes and wait for the light rail.

08:09: The light rail arrives and we jump on.

08:31: Off the light rail.

08:37: In the Duncan building.

08:39: I fill out my sign in sheet for bloodwork.

08:43: Sitting down waiting.

08:55: I am called to the back. The new system is not scanning my armband, and takes about 10 extra minutes than usual just to print the test labels for the tubes.

09:10: All done with bloodwork.

09:15: Walking across the skyway from the may’s clinic to the main building.

09:22: In the main building, second floor, heading up to the eighth floor to get my port accessed.

09:24: Check in to get my port accessed.

09:40: I am called to the back.

09:57: All done. Chatted with the nurse about traveling and prices.

09:59: On the elevator to the 6th floor to the Lymphoma/Myeloma Cancer Center for my appointment with Dr. Rodriguez.

10:01: I check in on the iPad.

10:07: I get a text to go to the frontdesk for them to go over my arm band and anything else.

10:12: I am called to the back for vitals and then put in room 15 for fast track.

10:15: The PA goes over my labs with me. My liver enzymes are getting better results. Just coughing and blowing my nose still.

10:23: All done with the PA.

10:24: Emily arrives. I give her the paperwork which we quickly review. I go over the Cipro I am taking for the cough.

10:30: All done with Emily.

10:32: I am heading down to the second floor to the clinical translational research center.

10:40: I check in at the front desk.

11:20: I am called to the back. Vitals taken. I am assigned room 9.

11:35: Ken is taking care of me. Just waiting for my medicine to arrive.

11:40: I turn on mission impossible.

12:30: My drug arrives.

12:40: Ken hangs my drug.

13:40: Drug is done. Flushing.

13:45: Flushing done.

13:50: Deaccessed and done with Ken for today.

14:09: All packed up.

14:15: Going to grab some yogurt/ice cream.

14:48: All done with my pound of yogurt.

14:51: Through pickens tower to the sky bridge to the may’s clinic and Duncan building.

15:04: Done skyway, down to first floor and now walking to the light rail station.

15:07: At the light rail station.

15:12: We jump on the light rail heading north to downtown.

15:37: Off the light rail a stop too soon.

15:42: Walking up Travis I see the 102 stopped at a red light. I point to the driver and he opens the door saying I made it just in time. We jump on.

16:37: At the airport.

16:54: Through security.

16:57: On the skyway.

17:02: At concourse A.

17:08: At gate A17

17:13: Preboarding begins.

17:17: Zone 3 boarding.

17:22: Sitting in my seat on the plane.

17:48: Boarding complete.

17:52: Pushing back. See you in New Orleans.

18:51: Touchdown.


03/09/2016: 17th Round Infusion at MD Anderson

03:30:  Up.

04:00:  Out the house.

04:10:  My wife and mom drop off my dad and I at the airport.

04:20:  Through airport security.

04:30:  Sitting at the gate.

04:52: Boarding begins.

04:57: On the plane.

05:12: Airplane door closed, airplane mode, see you in Houston.

05:15: Pushback.

05:25: Turning onto runway.

05:26: Takeoff.

06:20: Touchdown.

06:25: Off the plane. Terminal C.

06:30: into the restroom.

06:36: Bathroom break done, numbing cream on.

06:39: Waiting for the express 102 bus to downtown.

06:57: On the express 102 to downtown.

07:48: Off the bus. Walking to the light rail.

07:55: At the light rail station. Card tapped and waiting for the light rail.

07:57: Light rail arrives, we get on board and on our way.

08:20: Off the light rail.

08:21: Metro Police check our fare card with their scanner to make sure we scanned our card before we boarded the rail.

08:25: In the Duncan building.

08:29: Filling out the bookstore paper to check in.

08:31: Sitting in the waiting to be called back.

08:50: I am called to the back. The nurse sticks me twice and can’t get anything, so she has another nurse stick me who gets it on the first stick.

09:00: Heading over to the main building via the skyway to get my port accessed.

09:10: On the eighth floor. I check in at the infusion therapy clinic and sit and wait.

09:25: I am called to the back.

09:40: All done and accessed. Heading to the sixth floor to the lymphoma clinic.

09:41: I check in on the iPad…

09:43: I go called to the frontdesk. They tell me I have a copay of $50. I ask them if I am being seen as in network now because MD Anderson has been messing me up on the billing. She says she will check and then she says she cannot confirm if it is in network or out of network. I tell her I will not pay the copay then. I have billing issues with MD Anderson and I am not paying anything until everything is cleared up as far as billing and being in network or out of network because since I have started here in July, I have been treated both ways as in network and out of network and billed both ways and have paid out of network fees and then found out it was in network and had to request a refund for what I had paid. I have only paid once and was refunded. Since then I have not paid anything because of MD Anderson blaming Blue Cross and Blue Cross blaming MD Anderson and some out of network charges being reversed to in network after initial complaints, and then watching various charges for both in and out of network at random for services. We shall see what happens there. I told the nurse just bill me. I have to work out what is going on with MD Anderson financially.

09:47: I am called into the back for vitals.

09:52: The nurse leads us through the waiting room to my patient room. I pick up my bag and my dad follows us to the patient room.

09:55: Sitting in the patient room waiting.

10:05: Emily and Abby pop their head in and quickly check up on me. I give Emily my two week paperwork and my post every 4 treatment overview and she gives me my paperwork for two more weeks. Abby listens to my breathing and feels me for lumps. They are done and both leave and tell me Dr. Rodriguez will be in shortly.

10:15: Dr. Rodriguez comes in and sees me. The liver is still the same. Everything else is pretty good. She says that my orders have been put into the system and Emily helped her put them in. I am all done with here and we start heading out. Michael grabs me and we go back into the room. He needs to make sure that I am right in the new system and goes over his part of entering in my data of if any pain, medication changes, etc.

10:30: I am done at the lymphoma clinic. We head down the elevator to the second floor and check in at the clinical and traditional research center. I am given my pager and sit in the waiting room till it goes off.

10:40: The nurse calls my name, and we head to the back. I get my vitals taken and then to the back to bed 17.

10:55: Just waiting for my drug.

12:25: My drug arrives. I am hooked up and pumping begins.

13:45: Infusion complete. Deaccessed.

13:55: Bathroom break.

14:05: Walking the skywalk to the Duncan building.

14:15: Out of the Duncan building.

14:18: At the light rail station, day pass cards scanned.

14:22: The northbound light rail arrives. We jump on.

14:23: Heading downtown to our Central Station Main stop.

14:48: Off the light rail at the Preston station because the doors didn’t open up at central station main. We walk two blocks back and over a block, just one block more than needed, no big deal.

14:53: Sitting at the bus station waiting.

15:18: The bus pulls up and on I jump. Pay my fare by tapping the back of my backpack to the card reader and move on back. The bus is packed so my Dad and I are across the isle from one another. Just a city bus, not a travel bus this time.

16:00: At the airport.

16:05: At security.

16:33: Through security.

16:37: At the skyway.

16:38: On skyway heading to A.

16:42: At A, walking to the gate.

16:50: At the terminal, sitting around waiting.

17:27: Boarding begins.

17:40: Sitting in my seat on the plane.

17:50: Pushing back from the gate. See you in New Orleans. We stop pushing back, bad lightning probably the reason why. Crew and lightning don’t mix.

18:14: We start rolling out to the runaway.

19:34: Touchdown. We had to detour due to bad weather and flew way kit of our way to fly around the weather.

19:44: Off the plane.

© Craig