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10/10/2017: PET Scan @MD Anderson

Another trip to Houston for another PET/CT Scan to check on my status.

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07/12/2017: PET Scan Results

Everything was good on the scan, and still in remission.  There is just one spot to watch in the back vertebra. But could be a false positive from maybe an injury.

I will return in 3 month to MD Anderson for a follow up PET/CT to confirm a false positive/ injury or if it’s still there then start a plan for that then.

00:00:  I am in the business lab, working on scanning the receipts and putting them into a spreadsheet, as I need to turn in my receipts and spreadsheet to be reimbursed for travel, hotel expenses, food allowance, etc for coming to MD Anderson as part of my continuation of the study.

01:30:  Done putting all that together, now I focus on remoting into my office and completing some work that I was emailed about earlier in the day.

03:20:  All done with my work, back up to the hotel room I head and zzzzz.

07:15:  Up I am, shower I get, and pack up.

08:15: Check out I do.  Then over to the 6th floor of the main building to the lymphoma clinic.

08:35:  I check in at the lymphoma clinic.

08:40:  I get texted to go to the front desk and get my armband.

08:45:  Michael comes and gets us, however vitals were not taken yet, so Michal takes the vitals, and then leads us back to the patient room.

09:00:  We go over everything as usual with Micheal, this time adding my insulin and other new medicines since the last visit.

09:15:  Abby comes in and goes over the scan, overall everything is good.  Most if not all numbers have even less uptake than last time, all uptakes below any levels to even show any consideration.  However there is a spot on one of the vertebrae on my back.  I have not had any back pain, but I have been working a lot lately bringing a new law office online for a client of mine.  Climbing under desk, lifting heavy objects, and a number of other things that I possibly did hurt myself, I don’t remember any particular incident, but it most probably is that.  Being the location that it is in, and only a single location, Abby tends to agree with me that it is possibly an injury.  He recommends that we do another scan again in 3 months to see if anything shows up on the next scan.  If the same thing shows up, then it would be something to worry about, however, for now, we will just wait until then.  Abby then heads out to talk to Dr. Rodriguez before she stops in.

09:30:  Dr. Rodriguez steps in and goes over the PET/CT scan results as well, repeating everything that Abby says.  Overall she is very pleased with the results, but she does want to follow up with the one spot again.  So in 3 months we will have an additional scan to review that.

09:45:  I meet with Emily, the research nurse, and I give her the receipts and spreadsheet that I produce early this morning, so that I can get my reimbursement.  Reimbursements here don’t come quick and can take up to 8 months before a check is cut.  We head down to the 1st floor of the main building, so that I can get my blood taken again, this time blood that the study will keep for their research.

10:00:  I check in at research on the 1st floor.

10:20:  I get called to the back.

10:25:  The vampire sticks me, and she gets me on the first stick, however the tube is not taking the blood.  She tries a few times to push the tube on and off the needle, and that helps a little, but slow blood flow, she tries to find another tube but can’t find one, so she takes an empty syringe and fills it with my blood, then she pushes the blood into the tube.  The blood doesn’t go in easily as it seems the tube is pressurized, and didn’t have a vacuum on it to begin with.

10:35:  All done with the vampire.  My dad and I walk back up to the 3rd floor, across the skybridge to the rotary house.

11:15:  We decided to get the buffet at Apicius because of the menu, Shepard’s Pie, Chicken Pot Pie, Carrots, Mac & Cheese & Bacon, and Red Potatoes, along with some Top Round Beef, good stuff.

12:30:  All done with eating, time to head back to the airport, not much else to do here.

12:40:  Across the skybridge we head.

12:50:  Off the skybridge, through the May’s Clinic and the Duncan Building.

13:00:  Out the Duncan building to the light rail station.

13:05:  On the light rail.

13:30:  As we get to the downtown transit center station, we see the 102 bus just pulling up to the bus stop, so we get off the light rail, cross the street and are the last ones to jump on the 102 bus heading to the airport.

14:20:  Off of the bus we get.  My wife has some coffee she wants to finish, so we take the Subway to the Terminal A, since it is slower and she has time to finish her Coffee instead of throwing it away before going through security at Terminal C.

14:30:  On the Subway.

14:40: At Terminal A.

14:45: At Security

14:53: Through Security.

15:00:  We grab some drinks to hold us over for the 3 hours we will be sitting before taking off.

15:10:  Sitting at the gate, plug in the laptop, and get some work done.

17:55:  Boarding Begins.

18:03: Boarding Complete.

18:14: Take off.

19:18: Touchdown.

19:30: Uncle Vic pics us up at the airport, and gives us a ride home.

19:45: At home.

20:15: Out to eat we head, normal outing after a trip to Houston.

20:30:  Outback it is for walk about Wednesdays, where they have $9.99 steak, side, and drink all for one price.

22:00: Back at home.

22:15: In bed, back on the computer, another successful 2 day trip in Houston!

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07/11/2017: PET Scan @MD Anderson

Another scan day.

At MD Anderson today for a follow up PET/CT scan.  Hoping for the best, but keeping my options open just in case, as it helps make the news not as devastating if bad, but that much sweeter if good.  I feel fine, so that’s what counts.
06:00: Up

07:00:  Out the house.

07:15: At the airport.

07:30: Through security.

08:39: Flight delay.

09:40: Boarding begins.

09:50:  Sitting in my seat.

10:05: Push back.

10:16:  Take Off.

11:04: Touch Down.

11:17: Off the plane.

11:25: On the skyway.

11:30:  Off the skyway.

11:33: Bathroom break, these are important along the way to be timed at the right time.

11:45: On the bus.

13:15: At MD Anderson, in the Duncan building to the second floor skywalk to the May’s clinic.

13:22: I check in for my blood work at the diagnostics center in the may’s clinic on the second floor.

13:50:  I get called to the back.

14:10:  All done with the 3 tubes of blood the vampire took.

14:30:  I check in on the 6th floor at the PET imaging center.

15:00:  I get called to the back.

15:05:  I get weighed and height checked.  251 & 6’1.

15:30:  It takes 4 sticks to to get the IV started.  My veins are just flat he said.  This the guy everyone calls to when they can’t get an IV started.  He test my blood sugar, and 105 it is.  They use an IV because of having to put in the the radioactive glucose into me, they will also use it to inject the iodine solution into me during the CT portion of the scan as well.  He gives me the lovely opaque drink to me for me to drink as it helps with the contrast of the CT portion of the scan.  Not the best tasting stuff, and they want you to drink 40oz of this stuff.

15:40:  I get the radioactive glucose put into me, and they leave me in the dim room to rest and let the body absorb the glucose.

16:35:  I get called and escorted to the waiting area right outside the scanning rooms.  They tell me to empty my bladder and take a seat and wait.

16:40:  I am escorted to the PET/CT GE Machine.  The tech has me lay on my back, my head on the pillow, my hands over my head, my knees propped up with a knee cushion to keep back straight against the platform.  He puts me through the machine, hooks up the iodine IV, does a small test flush, and then walks out the room and starts the scan.  Within a minute, like he promised, I feel the flushing rush of the iodine solution rush through my body as the scanner is doing the CT portion of the scan.  The scanner then lines me up to the part of the scanner that does the PET part of the scan, and then starts rolling me at less than a mm a second beginning from my head to my knees out the back of the scanner.  Once my pelvis is cleared the scanner the tech comes in and removes my IV while the scan finishes up.  Once done, he then puts me back through the machine and helps me get up off of the table and walks me out the scanning area door.

17:10:  I meet my wife and my parents, and my Dad and I take a walk across the sky bridge to the Rotary House where John is there at the desk who checks me in.  We have room 1036 for the night.  We leave the bags, and return to the Mays clinic where my wife and mom are waiting.

We head back down to the light rail station, and catch the next train downtown.  We get off at the Preston station and walk the 2 blocks to Frank’s Pizza.

18:12: We get a xl pizza, pizza rolls, onion rings, and chicken wings, all put through the pizza oven.  Food taste so good when you have not eaten for about 24 hours.

19:30:  All done eating for tonight.  We are back at the light rail station heading back towards MD Anderson.

19:40:  On the light rail we are.

19:50:  Half way to the hospital, my wife realizes she didn’t pack her headache medicine or ibuprofen.  At the next stop my wife and I jump of the rail, while my parents continue to MD Anderson.  We walk to the next station going in the opposite direction, and take the rail back into town.  We get off at the stop across from CVS and go grab the medicine she needs.  We then jump back on the light rail going in the wrong direction so that we can jump on one going in the right direction without walking because the next station services trains going in both directions.  Once on the train going in the right direction, we head back out of town to the TMC Transit Center.

20:40:  Off the rail we are, walking back to the Duncan building, the Duncan building is closed, so we continue walking and go into the Mays clinic.  To the skybridge we go, we try to cut into the shortcut through the Mendelsohn building, but the doors are locked.  So we have to finish walking the skybridge to the main building then through the main building to another sky bridge that leads back to the Rotary House.

20:57:  We are back at the Rotary House.  The frozen yogurt station is still open so I grab my frozen yogurt.

21:20:  All done with the frozen yogurt.  We head upstairs and I take a nap…

23:50:  I wake up from my nap and head downstairs to do some work.

23:59:  Just getting situated and starting to get to work on their computers in the Business Center computer lab.

 

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If You Build It, They Will Come – 06/16/2017

At the Shrine on airline, aka Zephyrs field before the Baby Cakes game.

My dad and I were playing catch on the field and Dwier Brown walks up and asks to join us!  So we both got to throw a few with John Kinsella from the movie Field of Dreams.

https://twitter.com/cakesbaseball/status/875858519970467840

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04/11/2017: MD Anderson Follow Up

Time for my 3 month check up with Dr. Rodriguez for the study follow up.  My last infusion was December 27, 2016.

00:00:  Finish packing my bag.

01:45:  Done organizing and scanning my receipts and making a summary of the receipts for reimbursement of travel, hotel, and meal expenses for the study for my two trips in January 2017.

02:15:  To bed i go.

05:00: Up I am.

05:45:  My dad drives my wife and I to the airport.

06:06:  At the airport we are.  My wife finishes her coffee before going through security.

06:30:  In the security line we get.

06:40:  Through the security line.

06:45: My bag goes into the scanner, and sure enough “Bag Check”

06:50:  My bag is checked, nothing wrong, just the wallet and open zipper creating a suspicious image.

07:00:  Sitting at the gate.

08:05: Boarding begins.  I hang around till the end and ask if any exit row sests available.  There are, so we get upgraded from 28E&F to 12A&B, the exit row seats.

08:30:  We board the plane

08:33:  In out seats we are sitting.

09:01: Take Off

09:57: Touch down.  This is the first time I have landed on this runway, only because of the strong Easterly winds, no normal Westward landing today.

10:02:  At the gate we are.

10:05:  Off the plane we go.

10:07: Bathroom break.

10:15:  We start walking down to the skyway.

10:23: We get on the skyway.

10:27:  Off the skyway we get.

10:32:  At the bus stop.

10:46:  On the bus.  Not the normal travel bus, but one of those extended bus with the back end that swivels.  The seats in the bus have been redone and with plenty of new padded seats for the hour bus trip.

11:57:  Off the bus we get.  Some rain here in Houston, so slower speeds.  We walk through the light drizzle to the light rail station.

12:00: At the light rail station.

12:01:  On the light rail we get and head towards MD Anderson.

12:18:  Off the light rail, we wait under the light rail covering until the light sequence gets close to where the walk signal to cross the street will be just turning on as we get to the street.  We then walk in the light rain and make it to the Ducan Building, just a little wet, but not too bad.

12:22:  Into the Duncan Building we head.

12:30:  At the elevators in the hotel waiting to go to the ground floor to check in.  Seems like only 1 elevator is working.

12:35:  I check in on the first floor.  We have room 1141 tonight.  Back to the elevator to wait to go up to the 11th floor.

12:40: At the hotel room, check my schedule.

13:15:  I head out and head over to the main building.  The lab has moved from the second floor of the main building near elevator A to the tenth floor of the main building near elevator B.

13:35:  I check in for my blood work.  During the waiting time we are told to check the boards and that this is a new system and that they will not be calling names, just posting names on the board.

14:15:  They start calling everyone’s names because it seems that their board system is not working and people are not heading to the back or just not paying attention.

14:25:  I get called to the back to a second waiting room, where I move chairs 5 times at their request, they have no idea what they are doing with this new system.

14:30:  I finally get to go to get my blood taken.

14:35:  Two tubs of blood filled, all done here.  I try to head to my CTRC lab for tomorrow to see if I can get my bloodwork done in advance there to.  So I walk over to elevator A.

14:40:  At elevator A.

14:43:  In elevator A on the 10th, I go down to the 1st.

14:47:  I ask if I can get my lab work done today.  They check and say that they are full to capacity today and that they will not be able to do any bloodwork today, that’s fine, just thought I’d ask.

15:00:  I am back at the hotel room.  I grab a few things, then head downstairs to the ground floor of the hotel and into the Business Center where there are 4 computers for me to use.  I get on one and start catching up on some admin work, sending out some billing, and following up with a billing issue that a client is having with a third party vendor for their internet.

16:30:  All caught up with work for now that I can do remotely.  I log into my blog and update today.

16:45:  Now that today is updated, time to go update a few past days that I have left blank…

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12/27/2016: 37th Round Infusion at MD Anderson

05:20: Up I am.

05:30:  Ready am I.

05:45:  Ready is the wife finally…

05:50:  Out the door we head.

06:00:  At the airport we are.

06:15:  Through security we are.

06:25:  At the gate we sit.  Dee catches some Zzzzzzzs.

08:20:  Boarding begins.

08:25: I go up to the counter and ask the clerk if any exit row seats are available, there are, so she moves us from 17D & E to 12D & E.  No one is there and they would prefer to have someone in the emergency row to handle the emergency duties of the exit row while they handle the other entrench duties.

08:30: We board the plane.

08:35:  Buckled in we are.

08:57:  We push back.

09:03:  Taxing

09:12: Take off.

10:10: Touchdown

10:18:  Bathroom break.

10:25:  On our way to the skyway.

10:35:  On the skyway.

10:40:  Off the skyway.

10:43:  Outside by the bus stop we are.

10:52:  On the 102 bus we are heading downtown.

12:26:  Downtown we are at the Downtown Transit Center. We get off the bus, walk across the street and then to the light rail station.

12:30:  We swipe our day passes at the light rail station card readers.

12:40:  On the light rail we are.

12:58:  We arrive at the TMC Transit Center.  We get off the rail and head across the street down the sidewalk and into the Duncan Building.

13:20: We check in at the Hotel.

13:30: We head up to the room, put our bags up and then downstairs to the second floor to the skybridge to head over to the main building.  Then down the escalator to the second floor.

13:42: I check in on the touch screen computers at the diagnostic center in the main building.

14:00:  I get called to the back.

14:10:  All done with the bloodwork, we head back to the hotel.  I head downstairs to the computer lab and finish ordering some materials to finish up a project this weekend when I return.

16:45:  We head out, heading back over to the Duncan Building, then out to the lightrail, and to the Preston station.

17:15: We arrive at the Preston station and get off.

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12/15/2016: Head & Neck Surgeon Appointment at MD Anderson

00:20:  All done at the park, back to the hotel room my mom and I head.

00:30:  Back at the hotel room we are.  I do a few more things on my small laptop.

01:30:  To sleep I go.

09:00:  Up I am.  Quick shower and get dressed i get.

09:40:  Out the hotel room we head.

09:45:  I check out of the hotel.

09:50:  Over to the main building we head, then up Elevator A to the 10th floor to the Head and Neck clinic.

10:00:  I check in for the appointment.

10:15:  I am brought to the back and my vitals are checked and the nurse goes over the reason for the visit and everything so that she can relay this to the doctor.

10:30: A fellow comes in and examines me.  He squirts two compounds up my nose to numb my nose so that when he accesses it with the scope, there will be little reflex by me to the probing.  After he takes a look, he doesn’t see anything alarming, but he will need to get Dr. Amy Hessel to take a look as well and give her opinion.

10:50:  Dr. Amy pops in and greets us in her own special off the wall way.  She has a great attitude and a great cheerful personality.  She numbs me up again just to make sure and then she takes a look inside of my nose for herself.  She comes to the same conclusion that it doesn’t look like anything too abnormal, just some irritation, the only way to be sure is to do a biopsy of the lymphnode at the back of my throat/nose that is lighting up on the PET/CT and MRI images.  Dr. Amy will see when she can do the biopsy and will have her office follow up with me on the date and time when she knows where it will be done and what time.

11:15:  Out of the clinic we head, back down to the 3rd floor, back to the floor that leads to all the sky brdiges and a way out of here.

11:30:  At the Rotary House, grabbing some FroYo before heading back to the airport.

12:00:  All done with the FroYo time to start heading out.  However I get a client call just as I am packing up.  I unpack my laptop and get back to work.

13:15:  All done with resolving that client issue.  Now time to head out.

13:25:  At the other end of the skywalk and walking into the Duncan Building.

13:37:  Out of the Duncan Building.

13:40:  At the light rail station.

13:42:  On the light rail.

14:00:  At the downtown transit center waiting on the 102 bus to the airport.

14:11:  The bus arrives and on we get.

15:20:  At the airport we are.

15:30:  Through security.

15:40:  At the skyway.

15:45:  Off the skyway.

16:00:  At our gate.

17:15:  Boarding begins.

17:25:  On the plane in our seats.

17:59: Takeoff

18:42: Touchdown.

18:50:  Off the plane.

18:55:  I purchase tickets for 2 weeks.

19:12:  My Dad and wife pick up my mom and I from the airport.

19:27: At Outback we are for supper.

22:00: Back at the house we are.

23:00:  In bed, catching up on some more work, then Zzzzzzzzzz….

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12/14/2016: 36th Round Infusion at MD Anderson

00:00: At the park we still are.

00:44:  Done at the park, back to the hotel room we head.

01:00:  Back in the hotel room we are.  I get back on my laptop and do a few things.

03:00:  To sleep I get.

07:30:  Up I am.  Ready I get.

08:40:  Out the room we head.  Down to the second floor, across the skywalk, to the main building, to the 6th floor to the lymphoma clinic.

08:51:  I check in on the iPad.

08:53:  I get a text to go to the front desk to check things and get my arm band then back to my seat.

08:57:  I get texted for vitals at the Lavendar hallway.  So vitals I go get.

09:02:  All done with vitals, back into the waiting room area I am.

09:10:  Michael comes and gets me and brings me to the back.  Michael goes over the usual, all normal.

09:25:  Abey comes in and goes over everything.  He confirms that after doing some research, and pulling data from Germany, that has a nation wide healthcare system.  He looked where patients on the drug stopped the drug, and then got back on the drug at relapse and the drug worked again.  So the plan is to get a biopsy of the area in question in my nasal area, if that comes back clean then get off the study drug and sit and wait.  If it comes back, then get back on the drug and get the cancer cleaned up again and then move to transplant following remission again.  If the drug doesn’t work again, then move to another drug or trial to treat the cancer.  if the biopsy comes back with an issue, then find out exactly what cancer it is, if it is still the same thing then find another drug to treat it with, if it is something different then treat it with whatever treatment is required and go from there.

09:40:  Dr. Rodriguez comes in and does her usual exam on me, she confirms that what Abey said is correct, and that the plan of action is a decent one.  She confirms that I will continue to get treatment until after the biopsy results come back and then decide where to go from there.

10:00:  All done with the doctor appointment.  Upstairs to the 8th floor I head to get my port accessed.

10:20:  I get called to the back and get my port accessed.

10:30:  All done getting my port accessed.  Downstairs to the second floor we head for treatment.

10:40:  I check in at the CRTC.

11:00:  I get called to the back and vitals taken.

11:50:  The drug arrives.

12:00:  My infusion starts.

13:00: My infusion is done, flush starts

13:05:  All done with flushing, I get flushed and then heplocked by the nurse.

13:10:  Out of the room we are.  Go figure, a day that we don’t need to go catch the rail, bus, and plane, we get out of here super early.

13:15:  Since I don’t have any more appointments today, I go to the computer lab (business lab/4 computers), and I remote into my office computer and catch up on work.

17:25:  We head out the Rotary house back across the skywalk through the Mays clinic and the Duncan building out to the light rail.  We take the light rail downtown to the Preston exit, get off, walk a block back and then a block to the right and go to Frank’s Pizza for supper.

18:09:  At Frank’s Pizza we are!  They have Great Pizza, Pizza Rolls,  Everything is baked through the oven, onion rings, french fries, chicken wings, nothing is fried in the place.  The only thing that hits the grill is the Hamburgers.  I wouldn’t say their hamburgers are the best, but they are a pizza joint!  I will always return for pizza here when I visit, what can I say, I am Italian :P.

19:07:  Out of Frank’s we head, stuffed.  Back to the light rail.

19:32:  Off the light rail we get.  We walk back to the Duncan Building, through the May’s Clinic, across the skywalk, through the faculty center, back at the Rotary House.  We grab some frozen yogurt, and then back to the lab I head to continue doing some work.

23:30:  We head over the the main building to grab a snack and some drink from the Park.

23:40:  At the park, I grab some sushi and a few drinks.

23:59: Snacking at the park….

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12/13/2016: 36th Round Infusion at MD Anderson

12/13/2016:

00:00: Still working at a client location with my Dad running network cables, changing the configuration of their network, and installing a wireless access point.

00:15:  Wrapping up the job.

00:30:  Home my Dad and I are.

00:45:  A salad I eat.

01:30: I print up my mom and I’s boarding passes and pay for my Metro Day pass for my bus and light rail rides in Houston.

02:00:  I finish configuring the router’s network changes.

03:00:  Time to go to sleep.

06:00:  Up I am.

06:30:  Uncle Vic pics up my mom and I.  My Dad has work, and so does my wife, so just my mom and I on this trip.

07:00:  At the airport we are.

07:20:  Through security we are.  I get on my computer on the very slow internet that New Orleans has and catch up the blog.

08:15:  Our plane begins boarding.

08:30:  We have our seat on the plane.  We meet Karli who is also traveling to MD Anderson for her first visit to diagnose what is going on with her because of repetitive misfortunes in local doctors in the New Orleans area.  She does not know what to expect and traveling alone.  She is anxious and nervous and very talkative, but it is completely understandable considering the situation.  She is not a bother at all.  We make friends and go through each other’s history and medical journey, and I give her a few pointers about MD Anderson from my experience along the way.

08:57:  We are on our way.

10:09:  In Houston we arrive.

10:15:  Off the plane.

10:20:  Bathroom break.

10:25:  Karli asks how we are getting downtown, I tell her public transit, a lot cheaper than taxi or uber or.  She follows us to the skyway, then to Terminal C, then to the bus stop.

10:40:  We get on the 102 bus.

11:43:  We arrive downtown.  Karli is going to a hotel nearby and doesn’t have any appointments till tomorrow, so she grabs a uber to the hotel from the downtown transit center.  My mom and I continue onto the light rail and make our way to the Texas Medical Center Transit Center stop.

 

12:20:  Off the light rail we get and walk the block to the Duncan building.

12:30:  I check in at the rotary house and our room is not ready yet, so I leave my number for them to text me once the room is ready.  Back up to the second floor, across the skywalk to the main building we head.

12:40:  I check in at the main building, floor 2, at the diagnostic center for my bloodwork.

12:50:  I am called to the back.  They draw 3 tubes of blood.

12:55:  All done with the bloodwork, back across the skywalk to the rotary house to the frozen yogurt area where the tables are.  I get on my computer and take care of a few work things waiting for the hotel to text me.

14:33:  I get a text from the hotel saying the room is ready.  I pack up and then head downstairs to the first floor to check in.

14:40:  I check in.  We get room 832.  Up to the room we head.  I finish up a few things on my laptop.

16:20:  Out we head.  Across the skywalk back to the Mays Clinic and Duncan building, out to the light rail.

16:30: On the light rail we get.

16:56:  Off the light rail we get.

16:58:  At Frank’s Pizza we are.  I order a medium meat special pizza, and an order of the pizza rolls for free, as it is their coupon on the website.  My mom orders her meal, we then head upstairs to sit as there is no where to sit downstairs today.

17:20:  The Pizza Rolls are ready, I head downstairs and grab them, and then back upstairs.

17:30:  The Pizza is ready.  I head back downstairs and grab the pizza, and then back upstairs.  The food is delicious as always!

18:10:  Done we are at Frank’s Pizza.  Back to the light rail station we head, only a one block walk.

18:12:  We jump on the first light rail that comes through the station.

18:26:  Off the light rail we are at the TMC Transit Center.

18:30:  Into the Duncan building we head, then through the Mays Clinic, then across the skywalk into the Rotary House.

18:54:  Into the room we walk.

19:00:  I head back downstairs and grab some frozen yogurt with my laptop.

21:00:  All done with the frozen yogurt, they shut it down for tonight, so back up to the room we head, I put down my laptop, and then head back downstairs to the computer lab aka the business center.

23:30:  All done with the business center, back up to the hotel room I head to put my boarding passes for tomorrow in the room, and then back downstairs we head, across the skywalk to the main building to the park for some late night snacks.

23:45:  At the Park we are.  I grab some drink and a peanut butter bar and some sushi.

23:59:  Still at the park…

 

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11/30/2016: 35th Round Infusion at MD Anderson

11/30/2016:

00:00: Still in the park.

00:22:  All done at the park.  We make our way back to the hotel room.

00:30:  Back in the hotel room.

01:00:  To sleep I go.

07:30:  Up I am.  Shower and dressed I get.

08:30:  Leftover Cold Pizza for breakfast, great stuff!

09:15:  I check out of the hotel.

09:20:  Across the skywalk we head to the main building.

09:30:  I check in at the wound care clinic.  To access my port.

10:30:  I get called to the back.

10:40:  Port all accessed, down to the 6th floor to the Lymphoma clinic I head.

10:48:  I check in on the iPad.

10:53:  I get a text message to go to the front desk to get my vitals taken.

11:20:  I see Abey today as Dr. Rodriguez I wouldn’t be able to see to 13:00, and that is too late for me to see her and then still catch my flight out.

11:45:  All done with Abey, I head downstairs to the second floor and check in at the CRTC center.

12:10:  I get called to the back for vitals.  I get assigned room 10, but the bed does not go up, so then they assign me room 7.

12:20:  The nurse comes and checks on me,and just waiting on the drug.

13:00:  Still waiting on the drug.

13:30:  The drug shows up.  This is going to be cutting it close with an hour infusion and then another 5 – 10 minutes for flush.

13:40:  My drug starts.

14:40:  My drug is done.  Flush begins.

14:50: Flush done and deaccessed.

15:07: Onto the light rail we get.  We are going to take the light rail further north today and hook up with my mom’s cousin and he will bring us to the airport.  We are running close if we took the bus because we would have to wait for the bus and then ride the bus through the Greenspoint area which adds about 30 minutes tot he trip since the bus is not a straight non stop shot to the airport.

15:22:  We pass up where we would normally get on the bus, and the next bus will not get there to 15:27.

15:50:  Off the light rail we get and into my cousin Steve’s mini van we get.

16:20:  At the airport we are.  We just need to circle around because we went to concourse B and not A.

17:30:  Boarding begins.

17:50:  Boarding complete.

17:55:  Pushback.  We need to taxi longer because we are on the far runway and we need to take off to the North because of the wind so we need to travel much further to get onto the runway heading in the right direction.

18:15:  Takeoff.

19:00:  Touchdown.

19:25:  My dad and my wife pick us up at the airport.

 19:47: We arrive at Outback.

21:30:  All done at Outback.

21:38:  Back at the house.  I catch up on a few things.

ZzZzZzZzZzZz

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11/29/2016: 35th Round Infusion at MD Anderson

02:00:  I finish ordering parts for a client for a project that I am working on.  To sleep I go.

05:30:  Up I am, dressed I get.

05:57: Out we head.

06:19:  My dad drops off my mom and I at the airport.  My wife has school & work, so she doesn’t get to come.

06:40:  Through security we are.  Saw David Vitter on the way in, and he was in the express lane and we still beat him through security in the regular line.

06:50:  At the gate we sit.  No Atlanta flight as they are now leaving later on a regular schedule.

07:00:  On my cell phone updating my blog.  Sad that the cellular internet speed is faster than the free wifi provided at the airport.  Darn, maybe I should have told David Vitter about that… since free internet speeds are governed by state law.

08:15:  The plane from Ft. Lauderdale arrives.

08:30:  Our plane boarding begins.  We are zone 4, so I just continue updating my blog while everyone loads.

08:40:  We get up and board the plane when there is no line.

08:53:  The door is closed.

08:56:  We pushback.

08:59:  Taxi we start.

09:03:  Take off.

10:00:  I am drifting in and out of sleep on the plane.  I feel the jolt as we touchdown on landing.  Touchdown.

10:08: Off the plane.

10:15:  On the skywalk.

10:21:  Out by the bus stop.

10:40:  Onto the 102 express bus we get.

11:30:  Off the bus we get.  We walk the two blocks to the light rail location.

11:40:  On the light rail we get.  We get there and the train is just sitting there.  An accident somewhere along the line has the rail delayed, so we slowly make our way to MD Anderson.

12:20:  We finally get to the TMC Transit Center.  Off we get, to the Duncan building we walk, up tothe second floor, through the Mays Clinic, across the skywalk to the Mendelsohn Faculty Center, cut through the restaurant down the elevators and attempt to check in at the hotel.  The hotel is booked, only thing available is a King Suite for $350 a night, I tell them that we will pass up and wait for a cancellation.  I attempt to book for the 13 & 14 of December since I have treatment on the 14 and an appointment with the head and neck doctor on 15th.  Only the 14th is available so I take that to get that scheduled, and I get put on the waiting list for the 13th.  I go off to get my bloodwork.

12:44:  I check in to get my bloodwork.

12:46:  They call my name asking me if I am getting the bloodwork scheduled for tomorrow done today, I tell them yes.

12:52:  I get called to the back.  The usual, what’s your medical record number, name, birthday to check against the wrist band before they put it on my arm.  She takes me to the back and examines my right arm.  No luck in finding any veins there.  So she checks my left arm, feels some scar tissue, and then finds a spot n my left and sticks me.  One stick, blood return, she fills up the 3 vials with my blood and then disconnects me.

13:05:  All done giving blood.  Now on over to the Frozen Yogurt area we head.

13:10:  I get an email and text from a client.  I sit down at a table and get on the phone and remote into his computer and help him with the situation he is having.

13:45:  I am wrapping up that support call.

14:00:  I get a call from Rotary House saying that they do have a room available for me for tonight.  I tell them i will be right down and pack up my things and head downstairs.

14:15:  John checks me in.  He knows me by name now.

14:30:  In the room we are.  We snack on some stuffed asian baked dough.

16:00:  Out we head, back through the buildings back to the light rail.

16:38:  We are at Frank’s Pizza.  I get me an XL pizza with some pizza rolls.  The pizza rolls are rolled bread baked with cheese and/or Pepperoni.  Really good!  A group of policemen are there when we get there, they leave, and then a group of firemen come in.  They have Pizza by the slice options as well.  Oh great Pizza, I’ll be back in 2 weeks!

17:50:  We head out, back to the light rail, and back to MD Anderson we head.

18:20:  Off the light rail we are, back through the Duncan Building, Mays Clinic, Faculty Center.

18:27:  Back in the hotel room.

19:00:  Down to get some frozen yogurt.  I bring my computer as well and do some work while getting my frozen yogurt fix.

21:00:  Done with the frozen yogurt.  I head back upstairs, put up my laptop, and then down to the business center.  I print up my tickets and do some additional work by remoting into my office computer.

23:30: All done with my office work.  I head back up tot he hotel room, put my boarding passes into my bag, and then head back downstairs, over the skywalk to the main building to the Park.  I grab me some chicken fried steak and mashed potatoes, oh so good…

11:59:  Still in the park…

 

 

 

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11/16/2016:  34th Round Infusion at MD Anderson

0:00:  In the hotel room, I get on my laptop, eat some of the peanut butter bar, order items and wrap up what I need to jump on an restoration for the weekend.

02:00:  All done.  Time for me to go to sleep…

06:00:  Up I am.

06:30:  Shower I get.

07:00:  Finish ordering things I must.

09:30:  Out the hotel room we head, down to the first floor to check out  then back up to the second floor, across the skywalk to the main building to elevator B up to the 6th floor.

10:03:  I check in on the iPad.  I take a seat and get a text message that I checked in.

10:04: I get a text message to go to the frontdesk to get my armband.

10:05:  The vitals nurse calls my name for vitals.

10:07:  I get a text to go to the Iris hallway to meet my medical team.  A nurse brings us to the back.  Dr. Michelle Fanale will see me today as she is the head of the study and Dr. Rodriguez is out of the office today as well.

10:10:  The nurse comes and asks me the usual questions, falls, allergies, medicines, etc.

10:15:  The research nurse comes in and collects my journal and gives me a new journal for side effects of the drug.  She says that the MRI showed the same as the PET/CT.  We will have to wait to see what the doctor says for more info.

10:20:  The PA comes in and starts going over the scan and that I will see Dr. Amy C Hessel for a further review of the site in question.  She will either use a probe or do a biopsy or both.

10:30:  Dr Finale comes in and explains in further detail what the PA just went over. She clears up some questions of scheduling as well.  The plan is to stay on the trial to they can clear up what is showing up on the scan, if it is reactive or some form of cancer or what.  Other than that, my labs look good and I am scheduled for another treatment today.

11:30:  We are out of the office.  My appointment is for 11:15 at CTRC so we go straight to that.  I will let them access my port since we are already running a little behind.

11:30:  I check in with CRTC.

11:35:  I put on my numbing cream.

12:00:  I get called to the back, vitals, etc, I get assigned room 10.

12:30:  My port is accessed by the nurse.

12:45:  My drugs arrive after the nurse goes and retrieves them for me as she knows I have to get out of there no later than 2:30 if I don’t want to be rushed for my flight.  I am hooked up.

13:45:  Drugs all done, flushing begins.

13:55:  Flushed, heprined, deaccessed.

14:00:  Packed up, out the main building, to the skywalk to the mays clinic and the Duncan building.

14:15:  On the light rail we get heading back to the airport.

14:52:  Off the light rail at the downtown transit center we get off.  We wait at the 102 bus stop at the downtown transit center.

15:07:  We get onto the 102 express bus to the Bush airport.

16:11:  We arrive at the airport.

16:30: Through security we are.

16:35:  Onto the skyway we get, from Terminal C to Terminal A.

16:40:  Off the skyway we get.

16:50:  At the gate terminal we are.

17:20:  Boarding begins.

17:45:  The cabin door is shut.

17:48:  We push back.

17:54: Take off.

18:55:  Touchdown.

19:27:  Uncle Victor picks us up and brings us home.

19:42:  Home we arrive.

19:58:  Off we go to Applebees for supper.

20:45:  At Applebees we are.  Steak and ribs.

22:53:  All done, back home we head.

23:00:  Home we are.  I get on the computer and do some work, but not much and asleep I go.

23:59: ZzZzZzZzZz

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11/15/2016:  34th Round Infusion at MD Anderson

05:30:  Up I am.

05:45:  I check a few things on client servers and services.

06:00:  Dressed and ready I get.

06:25:  Uncle Victor picks me, my mom and dad up.  Dee has school and work so she is staying home.

06:40:  At the airport we are.

09:06: Takeoff we do

10:08: Touchown.

11:08:  The bus arrives and to the city we head.

12:07:  Downtown we are.  We get of at Travis and Mullan and walk to the light rail station.

12:15:  On the lightrail we are.

12:45:  Off the light rail we get through the Duncan Building, Mays Clinic, Skywalk, Rotary House, out the front door and across the street to the Outpatient Imaging Center we head.

13:00:  I check in for my MRI.  The MRI is to follow up with the PET/CT Scan findngs of some kind of activity in my nasal pharanx area at the back of my throat.  Hopefully this will rule out the spot.  They give me paperwork to fill out about magnetic imaging.  Just confirming ono metal fragments or implants or devices or screws or anything in me that would be influenced or pulled by the strong magnets of the MRI.

13:20: I am called to the back.  The usual weight, vitals, etc.  They give me scrubs to change into and lead me to the private changing room area.  Put my clothes into a paperbag that they provide many of hanging on the back of the door.  I then put on my scrubs.  I put my bag into a kocker that they provide, lock it and take my key with me.

13:35:  I am prepped by a nurse, go over the usual questons, falls, contageous diseases/countries, allergies, etc.  She then starts the IV in my left arm fo the contrast for the MRI scan. She has a little challenge starting the IV and uses a 22 guage needle.  She gets it into a vein but very slow blood return.  She has me squeeze my fist repetatively untll she gets enough blood to run a quick thyroid test on me to make sure it is safe for me to recieve the magnetic contrast.  The test is good to go.

13:55: The tech for the scan comes and gets me for the scan.  He leads me outside to the 18 wheeler cargo bin that has been setup as a MRI scanner.  Pretty much the same setup I had at Tulne for my PET/CT scans.  We step onto the lift gate which raises us up to the height of the trailer.  He lifts the gate andinto the trailer we step.

He preps the machine and then into the scanning room we step.  He lays me on the table, places the cushion under my knees to hold my back against the table.  He covers me up then raises the table. He then straps me to the table.  He then splaces ear buds in my ears t dampen the loud sounds of the magnets and electrical current during the scanning process.  He then puts cushions between the side of my head and the head support to minimize my head/neck movement for the scan since we are scanning my neck.  He then places the brace over my head.  He also placessome sort of mat over my chest and straps that down probably t minimize movement.  He slids me into the machine, lines me up on the lasers and then steps out of the room to his control panel in the other room.  He starts the fist scan about a 30 second scan he says.  After that first scan he steps back into the scanning room and pulls me back out the machine and removes the chest mat and says its for comfort and that I don’t really need it.  He asks me if that is more comfortable which it is, and then he slides me back into the machine.  He steps back out of the scanning room and back to his controls desk to start the scan back up.  Just the normal MRI magnetic noise sounds.  I am exhausted from lak of leep and take a nap inside the machine during my scan.  He is done the non contrast portion and steps back into the scanning room and injects the contrast into my iv.  Then back out the room he steps and restarts all of the scans he did, this time with the contrast in my systm.  I doze back off inside the machine.  The scan finishes up.  He takes me back out the machine, removes the head brace, pads, ar buds.  He asks me if thee is any other tests toay that I need the IV for which I tell him no, so he removes it.  We head out the trailer, down the lift gate, and back into the building.  He leads me to the locker area.  I grab my bag out my locker, change in one of the changing rooms.  Scrubs off, clothes on.  Out to the waiting area I head.  My parents are there waiting.  I get my bag from them, then back outside we head.  We cross the street to Rotary House.

15:30::  I check in and am assigned room 1120.  On the top floor.  We head upstairs, out our bags down, and then I head out to get my bloodwork.

15:35:  I head over the skywalk to the main building for my bloodwork.

15:41:  I check in going the computer at the sign in desk,.I take my seat.

15:50:  I am called to the back.  I have had this nurse before and she had issues sticking me the last time that I had her.  She is training someone today.  I bring up the stick issue from last time that way I am not this new trainee’s pin cushion.  She feels both arms and doesn’t feel much.  She decides to try to go for where they got me with the iv.  She sticks me but doesn’t catch the vein.  After some time she calls another nurse over to finish up the vein poking.  This nurse gets it, positional it is as she has to tilt the needle to get blood to flow.  They fill the 4 tubes.  The nurse reuses the wrap because they do not have any of the gause, just paper tape.  She sends me on my way.

16:15:  I meet back go with my parents.  We walk through the hospital to the skywalk, may’s clinic, Duncan building, outside to the light rail.

16:30  We catch the light rail to downtown.

17:13: We head into Bombay Pizza for our Indian Pizza..

18:20:  All done with our Pizza.  Bringing back some leftovers to the hotel for breakfast. We well the two blocks to the light rail stop.

18:30:  On the light rail we are.

18:55:  We get off the light rail at the Texas medical Center Transit Center.  Walk back to the Duncan Building, through the may’s clinic, back across the skyway to the Rotary House.

19:05:  Back in the hotel room we are.

19:15:  I head downstairs to print HP the boarding passes for tomorrow flight home.

19:35:  I get my laptop and head downstairs to get some frozen yogurt and to get some work done.

21:00  The frozen yogurt stand is closed.  I head back upstairs, put up my laptop and then head downstairs to the computer lab to remote into my work computer and finish up ordering I need to do for a project I am working on.  o also return a few emails and take care of business.

23:30:  I am done working for now and want to head over to the park.  I head across the skywalk to the main building and grab a snack a lovely custom made peanut butter bar and a few drinks.  I head back to the hotel room.

23:59:  Just getting back to my hotel room.  My parents are watching TV/sleeping.

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11/02/2016: 33rd Round Infusion at MD Anderson

11/2/2016:

00:20:  I finish checking up with Dee, and then head back upstairs.  I browse the TV channels.

01:30: ZzZzZzZzZzZz…

06:30:  Up I am, and shower I get.

07:30:  I put on my numbing cream.

07:50:  Out of room 432 we head.  I head down to the 1st floor

08:00:  I check out of the hotel room. and then up to the second floor.  Across to the skywalk to the main building, up elevator B to floor 6.

08:25:  I check in on the iPad at the Lymphoma Clinic.  I take a seat and catch up on my study journal.

08:30:  I get a text message to go to the front desk to get my armband.

08:33:  I get a text message to go to the Hibiscus hallway for vital signs.

08:40:  While getting vitals the bloodwork nurse says she needs to draw more bloodwork today.  I tell her I just had bloodwork yestereday, she told me to check with the frontdesk and find out if the bloodwork were repeats or new.

08:45:  I finish vitals and then go to the front desk.  The front desk says that the labs are for my thyroid levels, and are different from what I had labs done for yesterday.

08:50:  I go to the room to get my blood drawn.

09:00:  A nurse is ready to take me to the back to a patient room so  I can see Dr. Rodriguez.

09:10:  Abey checks in with me.

09:25:  Dr. Rodriguez checks in with me.  She informs me that they want to do an MRI to check the spot that lit up on the PET/CT scan to make sure that it is not anything but inflammation.  I ask her to schedule in 2 weeks on Tuesday before my next visit.  She says she will schedule that.  The next trip will be my last trip here on the Study.  It is still up in the air on what I will do next.  I can stay on the drug, but it wouldn’t be on the study.  I need to discuss the final options in 2 weeks with Dr. Rodriguez, but also get some second opinions from my local doctors back in Metairie/New Orleans on what is my next best level of treatment and options.  The research nurse comes in and gives me my paperwork and confirms that my next trip will be my last trip for the study.  Dr. Rodriguez confirms all of this and then says my orders are ready to go and I am approved for my second to last, 33rd, treatment.  I thank them and head out.

09:38:  Down the Hallway up Elevator C to the 6th floor.

09:40:  I check in at the Wound Care Clinic to get my port accessed.

10:05:  I get called to the back and Craig takes care of me and accesses my port.

10:15:  All done being accessed.  Over to Elevator B to head down to floor 2 to get my treatment.

10:25:  I check in to get my treatment.

10:45:  I get called to the back and get my vitals taken again.

11:00:  I am in room 13.

12:15:  My drug arrives, but now I am waiting on the blood draw nurse.

12:45:  The blood draw nurse, aka the vampire shows up and draws my tube of blood for the study.

12:50:  Infusion starts.

13:50:  Infusion finishes, flush begins.

14:00:  Flush finishes.  I am flushed with saline and heparin.

14:05:  Deaccessed.  Clean up my stuff.

14:14:  I call Emily who has been out on maternity leave to see if she is at the hospital.  She is and comes to meet us by the CRTC Center.

14:45:  All done catching up with Emily and congradulating her on her baby boy.  We head out to the skywalk, then through the May’s Clinic, Duncan Building, and out of MD Anderson we head.

14:55:  On the light rail we get.

15:10:  Off the light rail at the Downtown Transit Center we are.

15:27:  The 102 bus arrives and on we get.

16:37:  At the airport we are.

16:43:  At security.

16:48: Through security.

16:53:  Oh the skyway.

16:58:  Off the skyway.

17:00:  At the gate.

17:45:  Boarding begins.

17:47:  In the plane in the big front seat.

18:00:  Boarding complete.

18:10:  Waiting for refueling to complete.

18:15:  Door is closed.

18:25:  Push back.

18:30:  Taxing.

18:35:  On the runway.

18:36: Takeoff.

19:23: Touchdown.

19:27:  At the gate.

19:30:  Off the plane, I am the first one too.

19:33: Potty break.

19:36:  Outside.

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11/01/2016: 33rd Round Infusion at MD Anderson

11/01/2016: Another trip to Houston, possibly the one of the last few I have left considering my study is about to run out.

05:30: Up I am.

06:13:  Out the door we head.

06:30:  At the airport, my dad drops me off.

06:45:  Through security.  I get my normal zero vitamin waters, lemonade as usual, great flavor.

06:55:  I get my usual seat in the waiting area as the flight to Atlanta is boarding.

07:44:  My plane arrives.

07:55:  Boarding begins.

08:00:  I step door onto the ramp.

08:05:  I am sitting in my big front seat.

08:22:  Doors closed.

08:25:  Push back.

08:30: Taxing.

08:33:  Takeoff.

09:23:  Touch down.

09:30:  Off the plane.

09:40:  On the skyway.

09:45:  At the bus stop.

10:05:  On the bus I get.

10:08:  Downtown we head.

11:00:  Off the bus.

11:05:  At the light rail.

11:30:  Off the light rail.

11:39:  Into the Duncan building, up to the second floor, across the skywalk.

11:50:  I check in at the rotary house buy the room is not ready yet.  They take my cell number and will text me when the room is ready.  Off to do bloodwork.

11:53:  I check in on the second floor of the main building at the diagnostic center on the computer.

11:55:  They call my name.

11:56:  In the back, the vampire draws up my blood.

12:10:  All done with the blood.

12:32:  I am back in the rotary house area by the frozen yogurt, they have tables that I setup my laptop on and get to work helping a client with email issues and some phone issues.

15:00:  I get a text saying my room is ready.  Time to go check in!

15:15:  I check in.  I get room 932.  I go drop my bag off and head back down to 2.

15:30:  I get a message from my mom saying that her and my dad have just arrived at the Megabus station downtown.  I was just heading back to meet them for 4ish as the bus was scheduled to get in at 4:05.  However they ran ahead of schedule.  So through the skywalk, Mays Clinic and Duncan building I head, and to the light rail station.

15:38:  I get on the light rail.

15:54:  I get off the light rail and meet my parents at the downtown traffic center.

16:00: We walk 2 blocks east and go to Pappa’s BBQ.  I get the 3 Combo Rib meal, 3 Baby Back Ribs, 2 Pork Ribs, and 1 Beef Rib and two sides, one spicy rice and some beans.

17:15:  All done at Pappa’s BBQ.  We head back to the light rail at the Downtown Transit Center.

17:20:  Back on the light rail heading back to MD Anderson.

17:40: Back at the Texas Medical Center Transit Center.  Back through the Duncan Building, Mays Clinic, Skywalk, Hotel Room and about an hour nap.

18:50:  I head downstairs to get grab some more frozen yogurt.

19:45:  Back up to the hotel room.  I catch up on some billing and watch TV.

22:45:  I head downstairs and print up the airline tickets for tomorrow’s flight home.

23:00:  Back up to the hotel room to drop the boarding passes off upstairs.

23:05:  Across the skywalk, to the main building, down to the second floor, and to the park.  They are limited on what they have for food tonight.  I get an order of chicken wings and a drink.

23:40:  All done with the wings, I get a few drinks to go, and head back to the hotel room.

23:59:  I head back downstairs to lobby to call Dee…

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10/19/2016: PET Scan Results and 32nd Infusion @MD Anderson

06:30:  Up I am.

06:45:  Contrast sucks, bathroom one must go following oral contrast that is disgusting and a heavy drink for the CT portion of the scan yesterday.  Shower I get.

07:30:  I put my cream on my port area for my port access later.  Brush my teeth then pack everything up.

07:45: I check out at the hotel downstairs, and confirm my reservations for 2 weeks and  4 weeks out.  We walk across the skywalk to the main building, then up Elevator B to the 6th floor to the Lymphoma and Myeloma Center.

07:58:  I check in on the iPad and take a seat.

08:04:  I get a text to go to the front desk and get an armband and I comply.

08:08:  I get a text to go to the Hibiscus hallway for vitals.  All done with vitals, up 2 from 114.1 yesterday to 116.1 today.

08:20:  Michael brings us to the back.

08:30:  Gia shows up and asks me if I saw the doctor yet, I tell her no, she says that the doctor will go over the PET/CT scan results when she gets in.

08:50: Abey comes in and goes over the results. He is pretty happy with them.  He wishes the size of the masses would shrink, but no spots growing and no activity.present.  A few spots but all probably reactive to me being sick, as no new spots or big activity.  I am still in remission.  He compares the scans back to November when I was put into remission.  I ask him about the sizes of the masses and he says they are close to the same, no growth, so that’s good.  He wishes there would be more shrinkage though.  I ask about my eligibility to stay on the study since my year is approaching.  He says he would prefer it, but that’s up to the study.  He said he would ask Dr. Rodriguez about it.  So overall great report, now we just wait for Dr. Rodriguez.

09:20:  Dr. Rodriguez comes in.  She says all is good with the PET/CT.  She says she asked the other doctor about the study length and since I am approaching a year since I have been put into remission, the drug company is not extending the study for anyone because the drug is now available and FDA approved.  She says o have 2 more treatments on the study, then wait and see or off to another study drug or study Car T cells, or transplant, or no drug, wait to see what happens then get back on opdivo if it returns, so many options still await me.  I ask her about the tumor sizes, she says that they could stay there as scar tissue forever. I also had radiation treatment which creates more scar tissue so I am unlikely to see a huge reduction in mass sizes as a result.  The main thing is its just scar tissue and not active lymphoma/disease.  No activity is good.  Activity is more worrisome than inactive scar tissue.  She says she will check on my final date of treatment and let me know how much longer I should be on the drug, and if k don’t hear from bet to simply message her and she will her back to me that way.  She says my orders are signed and onto treatment #32.  She sends me on my way.

09:40:  Out of the patient room we are.  Up elevator B to floor 8, through the transplant unit, down the hall, around the corner.

09:47:  I check in at the wound care clinic to get my port accessed.  While waiting I email Dr. Safah’s nurse, Suzette and asks for updates on transplant and options.

10:35:  I get called to go the back to get my port accessed.

10:50:  All done being accessed, I head down elevator C to the 2nd floor and, through tbe sundial area, to the CRTC center to check in.

11:15:  I get called to the back to get my vitals taken, then I am assigned room 7.  I go back after putting my things in room 7 and get my pulse oxygen level taken a second time.

11:25:  The nurse comes in and checks me in to the machine in the room.  I turn on Daddies Home and work only laptop while I wait for my drug.

11:45. My dad heads off attend mass in th chapel.

12:30:  My drug arrives and Amy my nurse begins to hook the flush and tuning to me.  She then gets another nurse to confirm the orders, they I am who the drug is for and to confirm that it is he right drug.

12:45:  My drug is started.

13:15:  I get my order form for lunch.

12:30:  I get my lunch and quickly eat as I don’t have much time left as the infusion machine has started beeping.

13:4o: My drug is finished.  Amy starts the flush.

13:55:  My flush is done.

14:00:  Deaccesed I am.

14:10:  We hook back with my mom who was around the corner making phone calls and checking on things.

14:15:  Bathroom break.

14:23:  We hit the sky bridge to the may’s clinic/Duncan building.

14:30:  Outside and to the light rail station and on the lightrail that approaches as we get there..

14:45:  We get off at the downtown transit center and wait for the 102 express bus to the airport.  I check my phone for bus stop 309 and it says next bus comes at 3:05.

15:05:  Our bus arrived and on we get.  It is starting to rain and drizzle.

16:05:  Still on the bus just hiring the hardy toll road and couldn’t get onto the second exit because of the first exit closed to to expansion efforts for the hardy toll road.

16:18:  We arrive at the airport.

16:30:  Through security we are.

16:35:  Across the skway.

16:40:  Sitting near the window watching the planes be unloaded and loaded.

17:20:  We get a notification that our flight is delayed by about 2 hours.  So we won’t be leaving here to about 8:30.

21:20: Boarding begins.

21:37:  Pushback

21:55: Takeoff

22:39: Touchdown

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10/18/2016: PET Scan @MD Anderson

05:15: Up I am. Normal routine, get dressed, check my bag to make sure everything is packed and ready to go.

06:00:  Uncle Victor picks up my mom, dad, and out we head.  My wife has midterms this week, so therefore she cannot join us on the trip and staying home to take care of the fort.
06:20:  We arrive at the airport.

06:30:  At security we are.

06:40:  Through security we are.  The flight to Atlanta is already boarding, so by far C6 we sit and wait.  I update my phone while waiting.  I try to use my laptop but the airport Wi-Fi is so painfully slow, almost impossible to do anything with pings over 1000.

08:00:  Boarding begins.

08:10:  In the plane we are.  I am in the big front seat with my parents behind me in the big seats as well.

08:15:  The flight attendants are overly excited about beignets and the white powdered sugar, obviously not from here.

08:23:  Door is closed, boarding complete.

08:25: Push back.

08:34:  Takeoff.

09:27: Touchdown.

09:35: Off the plane.

09:40:  At the skyway.

09:44:  Off the skyway.

09:50:  At the bus stop.

10:05:  On the bus.

10:09:  Away we go.

11:05:  Downtown we are, off at Milan and Texas.  We walk the 2 blocks to the light rail station.

11:10:  At the light rail station.  Scan our day passes and onto the platform we walk.

11:13:  The light rail arrives and on we jump.

11:30: Off the light rail.  Wait for the long delayed crosswalk red-light signal

11:39:  Into the Duncan Building we head.

11:45:  I check in to the may’s clinic diagnostic Center.

12:05:  I get called.  They put on my arm bracelet, scan me and walk me to he back.  She takes 3 tubes of blood with no problems sticking me.

12:10:  All done with the bloodwork.  Upstairs to the 6th floor we head.

12:15:  I check in at the PET/CT Imaging Nuclear Medicine desk.

12:25:  I find a seat and catch up on my blog and work.

13:25:  I get called to the back.  They weigh me, 114.1kg.  They give me my contrast drink and blanket.  The nurse then comes in and prep me.  I ask for some ice for my contrast drink, he retrieves some and comes back and puts it in my drink for me.  He then preps me for an IV and the begins by using a green 18 inch Y IV starter.  It hurts like hell when he feeds it in my right arm.  He then pulls blood back with no issues and flushes the line with saline.

13:50:  Another nurse comes in and takes my glucose test, 124.  All good to proceed.  He then gives me the radio active glucose and leaves me in the room with the light off and the picture of a brick walkway with numerous color tulips in beds along a stream with more beds or tulips on the opposite side of the stream.  I take a nap as there is nothing else to do while waiting, no phone or anything while waiting.

14:50: Another nurse comes and gets me and instructs me to empty my bladder, finish my drink of the contrast and to wait for the tech to call me.

15:00: The tech calls me to the back and has me lay down on the table. He slides the cushion under my knees and then slides me all the way through the machine.  On the other side of the machine he hooks me up to the iodine contrast for the CT scan portion of the scan.  He does a test flow, some pressure and pain, but all good.  He then stops outside the scan begins.  They push the iodine into me and I feel my body burn and heat up.  That lasts for about 30 seconds to a minute while the CT scans my entire body by running my body through the front of the machine. Then it positions my head under the back of the scanner and slowly at the rate of a little over a millimeter a second which takes about 15 minutes to complete.  Towards the end since my head and arms are out the backside of the machine he comes and unhooks the iv, prepares the iodine contrast for the next patient and then takes the if out of my arm.  Once the scan is complete the platform travels back through the scanner.  Another tech then takes the padding from under my knees and helps me sit back up.  They send me on my way.

15:40:  I am out where my parents are waiting.  We go back down to the second floor of the may’s clinic.  Then across the skyway we traverse.  Through the faculty center through the restaurant, to the elevators and I check in at the front desk of the hotel.

16:00:  All done checking in.  We get room 436 for the night.  We go up to the room, put our thigns down, bathroom break, etc, and then prepare to head out.

16:15:  Out we head, down to the second floor, through the restaurant, through the faculty center, to the skywalk through the mays clinic and duncan building, and out to the stree to walk a block to the light rail station.

16:21:  On the light rail we get.

16:43:  Off the light rail we get.  We check out two places, and my parents decide nothing sounds exciting so we decide to go back to the Bombay Pizza Co.  The popular spot that we have been eating at the past few trips here.

16:51:  At the Bombay Pizza Co. we are.  I order my lasagna and a 12″ pizza, half a supreme, half a taste of India.  Great food as always.  My dad gets a lasagna as well and splits a pizza with my mom and mom my gets a Mediterranean salad.

18:11:  All done with eating tonight.  We head back to the light rail station.

18:16:  We aer back at the light rail station.  Onto the light rail we get.

18:40:  We are back at the TMC Transit center.

18:49:  Back at the Rotary House.  My dad goes and watches his NCIS.  My mom and I head down to the Business Center.  I print up the boarding passes for tomorrow.

17:05;  Back in the hotel room we are.

17:30:  I get my laptop and head downstairs for some frozen yogurt and to check a few things out while on the laptop.  My mom comes down and gets herself some yogurt and then gets some yogurt to bring up to my dad.  I just sit at my laptop and work on a few things.  I get to see the frozen yogurt shop close up tonight and watch the guy clean out one of the machines.

21:30:  I head back upstairs where I continue looking into some client issues form earlier today and think I have figured out their issues.

23:30:  I head over to the park.  I get an order of baked wings and a drink.

23:50:  All done I grab a few more drinks for the night and head back to the room.

23:59:  Back in the room and time to catch some ZzZzZzZzZzZz.  Goodnight!

 

 

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10/05/2016: 31st Round Infusion at MD Anderson

10/05/2016:

00:00:  I am in the business computer lab, and I try to print my tickets.  I log into Spirit’s website, but then the computer restarts for the nightly maintenance they do on the computer.  I an unable to print my tickets so I will just have to do it in the morning.

00:15:  Back in the hotel room I am.

00:30:  In bed I go and to sleep I drift.

06:30:  Up I am.

07:00:  Shower I get.

07:20:  Done with the shower, dressed I get.

07:35:  Numbing cream goes on and covered with saran wrap.

07:40:  Teeth I brush.

07:45:  Blog catching up on I do.

07:55:  Packing up my laptop and checking my room I do, then heading downstairs to check out.

08:00:  Going down to check out and the print up tickets I will.

08:10:  I try to print up my ticket but my seats that I reserved were no longer there.  I saw them Monday night when I printed up yesterday’s tickets.  I think what happened is last night when I was trying to print up the tickets I was waiting for the page to load to show me my tickets and that is when the computer restarted on me for the nightly updates MD Anderson does.  So that may have opened up my seats while transferring from reservations to seat assignments for the actual boarding pass.

08:15:  We head out to the skywalk as I am on the phone with Spirit.  She asks me if I made any changes last night, I tell her I didn’t, she says that she can only refund me for one seat, I told her I want both seats refunded since I wanted to sit next to my sister for the trip back.  She said that could do this.  I got my $60 refunded back to my card.

08:55:  I get off the phone with Spirit and I just need to check in now to get my random tickets.

08:56:  My temp research nurse is in the waiting area and she takes my journal and gives me a new one.

09:02:  I check in on the iPad.

09:04:  I get a text to go to the front desk and get my wristband.

09:08:  I get a text to go to the hibiscus hallway for my vitals.  I have a 99.1 temp, prob goes with my sick symptoms, sore throat, coughing, running nose, congestion, etc.

09:20:  All done with vitals.

09:25:  Michael grabs me, we go into the back and he does his quick nurse interview.

09:30:  Back out int he waiting room.

09:45:  Michael brings me back again this time to wait for the doctor, I am in room 28.

10:20:  Dr. Rodriguez shows up, bloodwork is fine, the normal elevations in liver is there, nothing drastic like the witheld time.  She goes through the quick overview, then tells me the orders are signed for my labs and sends me on my way.

10:31:  I check in upstairs on the 8th floor at the Infusion Therapy Clinic for my port access.

11:00:  I finish catching up my blog waiting to be called to the back for my port access.

11:10:  I am called to the back.

11:20:  All done getting accessed.  Down to the second floor I head.

11:25:  I check in at the CTRC center.  They are running behind today.

12:30:  I get called to the back and vitals taken.

12:40:  I am assigned room 13.  I put my stuff in my room and go back to get my O2 level taken again.

12:45: I am getting setup in my room.

13:10:  I get my menu to order lunch.

13:35:  My medicine arrives.

13:40:  Verification check of me and my medicine, and I am hooked up.

13:44:  My lunch is delivered.

13:45:  My drug starts.

14:45:  My drug stops and flush starts.

14:55:  Flush all done, time to be deaccessed and then head out.  Packing up…

15:00:  Heading out.

15:05:  Bathroom break.

15:10:  Skywalk.

15:20: Outside the Duncan building.  Got to walk in rain from Duncan building to rail, 2 blocks.

15:25:  On the rail.

15:38:  Off the light rail.  Across her street we walk.

15:40:  At the bus station for the 102 express bus downtown.

15:55: On the bus.  HOV lane on 45 closed so we have to take the regular interstate and drive in traffic.

17:20:  We get to the airport.  We go downstairs and try to walk it and see the subway is a fraction quicker than walking but slower than the skyway.  We are stuck taking the subway because the skyway is only past security.  My sister calculates it’s about a half a mile from terminal C to terminal A.

My sister runs to get our boarding passes as it says check in with an agent by 17:27.

17:34:  My sister has our boarding passes she printed at the kiosk.

17:36:  We are at TSA at terminal A and there is no line at all, not even one person.

17:40:  Through security we are.

17:42:  At the gate we are, not even boarding yet.  I go grab a drink for the flight and go back to the gate area.

17:55:  Boarding begins.

18:08:  I am in the plane inky seat, 7C, well actually my sisters seat, since she is smaller we switched seats because I didn’t want to sit in the middle seat.

18:19:  Door closed.

18:21:  Pushing back.

18:30: Take off.

19:19:  Touchdown.

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10/04/2016: 31st Round Infusion at MD Anderson

05:10:  Up I am and prepped I get.

05:30:  All packed up and ready to go.  My youngest sister, Sarah, is taking the trip with me this time.  My wife has school and work and unable to make the trip with me.

05:50:  To the airport we head.

06:10:  At the airport we arrive, and into the TSA Security Checkpoint line we get.

06:15:  The agent checks our passes.

06:17:  At the walkthrough machine we are, as I walk through I get “randomly” selected for further screening.  Hmm, 6 of us walk through and 4 of us are “randomly” selected.  I step off to the side and they swab my hands checking for explosive residue.  Well just my luck the machine goes off, so now I need to go through further testing.  They take my bin and my bag and swab it, along with my shoes, phone, laptop and put that into the machine.  That comes back clean.  So my hands are dirty but my bag and everything else I touched today is clean?  False positive if you ask me!  They take my license and fill out further paperwork on me and then into a private screening room.  They ask me if I have any medical implanted devices, I tell them I have a port.  They then explain to me the pat down procedure.  They do a full frisk/pat down thoroughly feeling my entire body for anything that shouldn’t be there.  Nothing found…  One of them leaves the room and comes back and says everything is good to go.  They give me my bag and my bin and my license back.  I head out, put my shoes back on, pack my laptop  back up and put the small things back in my bag.  What a wonderful way to begin my morning.

06:25:  All done with security.

06:30:  Sitting at C5 waiting for the flight to Atlanta to leave so we can get in C6 again.

07:00:  We move over to C6, now just waiting for our plane to arrive and boarding to begin.

07:52: The plane arrives from Ft. Lauderdale.

08:12:  Boarding begins for our flight to Houston.

08:20:  Seated in our big front seats on the plane.

08:30: Door closed.

08:34: Pushing back.

08:37: Taxing

08:42:  On the runway.

08:43: Takeoff.

09:34:  Touchdown.

09:39:  Waiting for a gate to open.

09:50:  We get to the gate.

09:52:  Off the plane.

09:55: Bathroom break.

09:58:  To the skyway.

10:03:  On the skyway.

10:08:  Off the skyway.

10:10:  At the bus stop to downtown.

10:37:  On the bus.

10:39:  Off we go.

11:25:  Off the bus.

11:33:  At the light rail.

11:37:  On the light rail.

12:00:  Off the light rail.

12:06:  In the Duncan Building.

12:08:  Across the skywalk through the faculty center to the elevators to the first floor of the rotary house.

12:10:  I check in at the rotary house but our room is not ready yet, so the clerk takes my cell phone number and the system will text us when the room is ready.

12:12: Back up to the second floor and across the skywalk to the main building, down the escalators to the second floor.

12:20:  I check in on the computers at the diagnostic Center and take a seat in the waiting room.

12:23:  I get a text from the rotary house saying that the room won’t be ready for another 60-120 minutes.

12:31:  I get a text staying my room is ready for me to come back and check in.  I will just wait here until I do my bloodwork before going back to check in.

12:40:  I get called back.  They check my name, medical record number, and then lead me to the back.

12:45:  I am in the chair.  The nurse takes a while feeling my arm trying to find a place to stick.  She finally sticks me in the outside cubical area of my right arm, and the blood flows nicely.  She fills the 4 tubes of blood.

12:55:  I am all done with bloodwork, we head back over to the skywalk to the rotary house and back downstairs to the frontdesk of the hotel to check in.

13:00:  We check in, this time I am in room 321, across the hall from where I was two weeks ago.

13:05:  Into the room.  I setup my laptop, update my blog and get ready for any incoming work that may come my way while I am in Houston.

13:14:  I get an email from a client.  I check into things and don’t find anything out of the ordinary and report back.

14:45:  Done catching up on work and paying credit card bills.  Time to head out for some frozen yogurt, food, and to show my sister around.

15:00:  We grab our frozen yogurt.

15:20:  I give my sister a tour of the main building and shower her everywhere I go everytime I am here and the basic outlay of the hospital.

15:50:  We drop off the things she collected for her research back at the hotel room, and then head out to the skywalk.

16:00:  At the light rail station.  I take her south and show her the Texans Stadium from the light rail perspective and show her where my Dad, my wife and I walked that night we missed the rail after meeting my dad at the airport last scan.

16:56:  We reach the Bombay Pizza Restaurant.  I order my usual lasagna and a 12 inch half and half pizza, a taste of India and the K Renee.

18:04:  All done at Bombay Pizza, my sister wants to go walking, so we walk from Bombay Pizza south and zigzag streets all the way back down past the MegaBus stop and then over to the Downtown Transit Center Light Rail station.

18:30:  We jump on the light rail back down south and head back to MD Anderson.

18:55:  Off of the light rail we are and walking back to the Duncan building.

19:00:  Across the skywalk we head.

19:10:  Back in the hotel room we are.  I catch up on some work.

20:05:  I head back down stairs to get some frozen yogurt and listen to the vice presidential debate as I eat my yogurt and continue my work.

21:15:  Back upstairs I head to work some more.

23:15:  I wrap up my work.

23:25:  I head down to the park to grab some drinks for the night.

23:35:  At the park.

23:55:  Back at the hotel room I am.

23:59:  I am heading down to print my airline tickets for tomorrow.

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09/21/2016: 30th Round Infusion at MD Anderson

01:30:  All done with my work for tonight.

06:45:  Up I am.  Shower anf ready I get.

08:00:  Out of the room we head.

08:05:  I check out.  Then back up to the second floor, across the skyway, and up to the sixth floor.

08:15:  I check in on the iPad at the myeloma and lymphoma clinic on the 6th floor of the main building.

08:18:  I get s text to go to the frontdesk 

08:19:  I get a text to go to the iris hallway and get my vitals taken.

08:22:  Vitals all done being taken.

08:24:  Micheal comes out and brings my mom and I to the back to the patient examination room.  He goes over the normal questions, any pain, falls, medication changes, etc.  All negative.

08:45:  Gia, the research nurse comes in and collects my journal and gives me a new journal.  She says Dr. Rodriguez is not they yet, but based on my bloodwork she will release my orders.

09:00:  Abey comes in and goes over the bloodwork which is good again.

09:35:  Dr. Rodriguez comes in.  Everything looks great as normal.  She says she will see me in 2 weeks.

09:45:  I check in on the eighth floor at the would care clinic to get my port accessed. I then head down to the second floor and check in on the second floor at the crtc for my drug infusion then back up to the eighth floor to get accessed.

10:25:  I get called back and get my port accessed.

10:35:  All done being accessed.  I need down back to the second floor to the crtc center for treatment.  I tell the frontdesk I am back and they send me back for vitals.

10:45:  I am assigned room 10.  I setup my laptop again as usual to work.  It takes forever to boot and I suspect something wrong.  I hold it up to my ear to listen to the hard drive and it is making a weird repetitive noise while trying to access the drive.  I turn off the computer and pack it back up as I will recover the contents later and not touch it now that way I have better chances of recovering everything   I get out my cell phone SD begin using it to follow up on emails and catch up on my blog.

12:00:  My nurse tells me she is running upstairs to the pharmacy to get my drug.

12:15:  She has my drug, does vitals, and calls another nurse for verification of me and the drug before administration.

12:25:  My drug administration begins.

12:30:  My lunch arrives, turkey sandwich, soup, fruits, drink, and chips.

13:05:  I finish updating my blog from yesterday and today.  Now time to eat.

13:25:  All done with the drug.

13:30:  All done being flushed.

13:35: Deaccessed.  Quick bathroom break and out we head.

13:55:  We stop for some frozen yogurt.

14:15:  All done with the yogurt out we head.

14:20:  We hit the skywalk and head over to the may’s clinic and Duncan building, out to the rail station.

14:35:  We arrive at the rail station and saw a train pull off as we approached.

14:40:  On the light rail.

14:53:  Off the light rail at the downtown transit center.

14:54:  At the 102 bus stop by the downtown transit center.

15:03:  On the bus.

16:15:  At the airport.

16:20:  At security.

16:25: Through the first checker.

16:35:  Through security.

16:40:  On the skyway to terminal A.

16:50: At the gate.

17:40:  Houston’s airport has great internet speed! 

17:45:  Boarding begins.

17:48:  Sitting in the plane in the big front seat.

18:14: Door closed.

18:15: Pushing back.

18:28: Takeoff

19:15:  Touchdown 

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09/20/2016: 30th Round Infusion at MD Anderson

05:30:  Up I am.

05:51:  Out the door we head.  My dad is dropping my mom and I off at the airport on his way to work.  My wife has work and school, so she probably won’t be on any additional trips until the semester is over.

06:03:  At the airport we are.

06:15:  Through security we are.  I pick up two Zero Water’s the Lemonade flavor and then take a seat at gate C5 while we wait for Spirit’s flight to Atlanta clear out of C6.

07:05:  Atlanta’s flight is boarding, so we switch to C6 once seating opens up.

07:35:  The yellow plane pulls up to the gate, our plane to Houston.

Seriously Louisiana and New Orleans Airport.  Louisiana for having a law on limiting the speed on free internet, and New Orleans Airport for providing such slow internet service.  Houston beats New Orleans easily with their free internet speed.  Here is New Orleans internet speed at the airport.

I know its not COX because COX has great internet speeds, it is the way it is limited by the law and by the airport, sucks!

08:03:  Our boarding begins.  See you in the plane.

08:10:  In the plane we are.  In the back we are, no big front seats for this flight.  However we are on the big yellow plane.

08:30:  Push back.

08:37: Taxing

08:39:  On the runway.

08:40:  Takeoff.

09:28:  Touchdown

09:35: At the gate in Houston.

09:42:  Off the plane.

09:47:  On the skyway.

09:50:  Off the skyway.

09:56:  At the bus stop waiting on the 102 express bus.

10:06:  On the bus.

11:04:  Off the bus.  Walk 2 blocks to the rail.

11:10:  At the light rail station.

11:14:  On the light rail.

11:34:  Off the light rail. Walking to the Duncan building.

11:40:  In the Duncan Building. Bathroom stop and then across the skywalk to the rotary house.

12:00:  I attempt to check into my hotel room buy the room is not ready yet, so across the skywalk to the main building to go do bloodwork I head.

12:15:  I check in on the second floor of the main building at the diagnostic Center.

12:45:  I am called to the back.

13:00:  All done with the vampire and filling the 3 tubes of blood.

13:02:  Rotary House calls me and tells me that my room is ready, so back over the skyway we head and then down to the first floor to check in at the rotary house.

13:15:  All checked in and head up to the room.  Today is room 321.

13:30:  We head out to get some frozen yogurt.

13:45:  We grab stir fry and eat that first because my mom is hungry and needs some real food first.

14:15:  We grab some frozen yogurt.  However my receipt doesn’t print out and I need this for expenses to get reimbursed for the study.  I talk to the Starbucks cashier who walls a manager.

14:25:  The Starbucks cashier calls the manager again.

14:35:  The manager shows up and has a bad attitude from the beginning.  I explain to him that the point of sale terminal didn’t print up a receipt and I need one for my expense report.  He tells me there is no way that he can print kne up. I tell him then if he can’t give me a receipt that I want a refund.  He tells me he can’t give me a refund without a receipt.  I tell him so I purchased this and  your system didn’t get a receipt which you are required to do and now you can’t give me a refund because I don’t have a receipt which you failed to provide me with from the beginning.  So technically your systems problems equates to you can keep my money.  He then says well how do I know you paid for that and you are not trying to get a refund without paying.  He turns away from me and starts walking to the terminal. I then say to him as I follow him, so what you are telling me is there is nothing you can do for me and the only way for me to get s refund is for me to call up my credit card company and dispute this transaction as a fraudulent charge because of your failure to provide me with a receipt in the first place and then you can’t give me a refund because I don’t have s receipt.  This catches his attention and he says in a sarcastic tone if you are willing to work with me I will see what I can do.  He logs into the terminal which I quickly see that he does not know how to use as he is clicking around but not pulling up reports or transactions to search for the amount box KY transaction or my last 4 digits of my card.  He gets frustrated and clicks out.  I tell him this is not the first time I have had issues with this machine.  He fixes the paper in the receipt printer.  He takes out his wallet, asks to see my yogurt, weighs it and pays with his credit card and gives me his receipt.  As he walks away he says maybe I should try paying at other places for the yogurt and just leaves me there, no apologies or anything.  He was just having a bad day, but that is no way to treat customers and on top of that cancer patients at MD Anderson.  He doesn’t know how to do his job as a manager because if he did he could have reprinted the receipt, I know this because of my profession a dealing with point of sale systems.  He needs some training on the system.  He also needs some training in customer service and attitude when dealing with clients.  It at seem like a measly $8 to him, but when undergoing treatment, meals, travel expenses, everything I am spending money to be here, he is making money while he is here and he should be happy he has a job and his health when dealing with customers and patients.

Rant over…

14:50:  I eat my melted frozen yogurt after the poor customer service I received.

15:29:  We head out, back across the skywalk to the May’s Clinic and Duncan building back to the lightrail.

15:40:  At the light rail and on the train we get.

16:08:  We get to the Bombay Pizza Company.  I order my lasagna and a 12″ Indian bread crust pizza.  Great food as always!

18:15:  We head out, back to the light rail station.

18:25:  At the light rail station.

18:30:  On the light rail.

18:50:  Back at the TMC Transit Center light rail station.

19:00:  Back at the Rotary House.

19:05:  Back in the hotel room.

20:00:  I head downstairs and take my laptop with me to get me some more frozen yogurt. I setup my laptop on the empty tables around the area.  This time before getting my yogurt I examine the receipt machine. I hit the feed button and receipt paper comes out so I know the printer is good to go to get the receipt.  I get yogurt then check out with no issues.  I do some ordering on my laptop.

20:45:  I get a second helping of yogurt, testing the machine out again before checking out.

21:00:  I head back up to the hotel room and continue working on my laptop while I finish my frozen yogurt.

23:30:  I take a break from work and my mom and I head down to the park which is across the skywalk and on the second floor of the main building 

23:40:  I grab 4 drinks and head back to the hotel room.

23:55:  Back at the hotel room.  I put three drinks in the fridge and get back on my laptop and continue doing some work.

23:59:  Still working.

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09/07/2016: 29th Round Infusion at MD Anderson

06:00:  Up I am.

06:30:  Shower I get.

07:00:  I apply my numbing cream to my port area and put my saran wrap over the area then put my shirt over that.  Saran wrap is great for keeping my shirt clean.

07:15:  I check to see if I can get my airline boarding passes printed so I can follow my normal routine at the airport and not have to speak with a ticketing agent at the counter before security and have to go through security checkpoint A.  I can just arrive security checkpoint C where the bus drops us off and then straight to the gate.  I can.  I am on my laptop so I will just go reprint the boarding pass at the business center downstairs when I check out.

07:20:  I pack up my laptop, check the room, then my dad and I head out.

07:30:  I check out at the frontdesk at the hotel.

07:40:  I reprint out boarding passes.  Then off to the main building, floor 8 to get my port accessed.

07:55:  I check in at the wound care clinic to get my port accessed.

08:02:  I get called to the back.

08:10:  I get my port accessed.  During the process he forgot to get a one way valve cap.  He shows me which draw to get it out of and I get it then I need to open it for him and drop the cap onto the sterile area because he already has his sterile gloves on and can’t touch anything outside of the sterile area.  I grab the package and turn it upside down and pull the tabs so the cap falls into the sterile area and then throw the packaging away.  He grabs the cap and puts it onto the end of the line to my port.  All done.

08:15:  To the lymphoma clinic we head down on the 6th floor.

08:27:  I check in.

08:30: I get a text to go to the frontdesk so that they can check my wristband.

08:31:  I get a text to go to the hibiscus hallway for my vital signs.

08:35:  I bet my vital signs taken.

08:40:  Michael comes and gets me from the vital signs as I am finishing up and takes me to the back to the patient room.  I grab my bag and Dad along the way.

08:48:  Micheal is done asking me all the usual questions, pain, falls, medicine changes etc, all is as usual.

08:51:  We are waiting for Dr. Rodriguez.

09:17:  Abey comes in and checks me over.  Liver levels are good, he feels me all over to see if any lymph nodes are detectable, but everything is the same, and all good.  He leaves.

09:30:  Dr. Rodriguez comes in and goes over everything again, everything is good, so we will proceed with treatment.  I now just need to wait on the research nurse.

09:45:  The research nurse comes in, collects my study questions, diary and gives me my new diary for the next 2 weeks.

09:53:  We are on our way down to the 2nd floor to CRTC for infusion.

09:55:  I check in, but my orders are not signed yet.  I text with two clients with some issues they are experiencing and troubleshoot it.

10:26:  I email Abey and told them that they told me that they are waiting for my orders to be signed.  He said he signed it 10 minutes ago, so I tel the front desk that when they return, they look it up and tell me they see it signed and will let the nurse know and to have a seat again and I will be called shortly.

10:30:  I am called to the back.  They take my vitals.

10:40:  I am assigned room 11.  They take my oxygen level again.

10:50:  I have my computer all setup and back to work I go.

11:35:  My drug is here, and they start prepping me and double checking me and the drug.

11:45:  My drug infusion starts.

12:50:  Chemo is done, flush begins.

13:00:  Flush complete.  Deacceased.

13:05: I get some Frozen Yogurt at MD Anderson.

13:30:  All done with the Frozen Yogurt, out we head.

13:48:  On the light rail we get.

14:12:  Off the light rail we are and to the bus stop we walk.

 14:17:  The bus arrives.  We get on very few seats left and we fill up at the next stop.  Then at the next stop we run into a broken down bus, so they load most of the passengers from that bus into the isle of our bus.

14:30:  We are on out way.

15:35:  We arrive at IAH.

15:45:  Through security.  We are earlier than usual so we do grab a pizza.

16:05:  All done with the pizza, to the skyway we head.

16:08:  On the skyway we are.

16:12:  Off the skyway.

16:15:  By the gate.  I get on my laptop and email customer support to help me resolve a quality issue.  We email back and forth as I change settings.  I will need to wait to tomorrow to see if those changes resolve the issue.  I will double-check those changes tonight km a regular size computer screen.

17:15:  All done with the changes.  I go buy a drink for the flight.

17:30:  Boarding begins.  I shutdown my computer and pack up and board the plane.

17:41:  In the plane I get.  My dad are on the big front seats again, same seats as before.

18:00:  The flight attendants and pilot get their print outs.

18:06:  The door is closed.

18:09:  We push back.

18:23: Takeoff.

19:08: Touchdown.

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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!

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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.

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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…

© Craig
CyberChimps