10:00:  I meet with Dr. Veith.  I tell him my first radiation treatment of 20 starts today at 1PM.  4 weeks, M-F of treatment.  He says the plan is to do the 4 weeks of treatment then, then meet with him again once treatment is done, order another PET/CT scan, and then follow up with some Opdivo, the same drug that I got in Houston on the study, but since it was approved towards the end of my study, I can now get it here.  So that is the plan…  I’ll see him in 7 weeks.

13:00:  I check in for my radiation treatment.  I am told I will get a Radiology Oncology business card with a barcode on the back of it that I can use to check in with, within the next few days.  I have a seat in the waiting area.

13:10:  I am called by a tech at the front desk, and they lead me to the back.  He tells me that everyday I will be called over the loud speaker, just to come to the back on my own, and I will have all my treatments in the same room, on the same machine, as they have 2 radiation treatment machines.  I lay down on an adjustable platform with my hands above my head grasping two pegs to keep me in position, and up out of the way of the radiation beam.  They place a formed pad under my knees to put me into position and then raise the platform into position and begin to line up the blue tattoo markers they did about 2 weeks ago.  These blue dots are lined up with prepositioned non movable green lasers that are always in the room.  Once I am aligned correctly, they step out.  The machine then begins by deploying the High Frequency Generator (the item that shoots the xray radiation at you), and the receiver plate, that receives the xray images on either side of me, left and right.  It takes an Xray, and then the whole machine rotates counter clockwise a quarter of a turn for another Xray of me, t.his time the High Frequency Generator above me, and then plate underneath me.  The two items retract back into the machine.  The tech then uses the images taken on the day of the tattoo placements from a CT scan to align the platform to the correct position to equal that to what has been programmed into the system by Dr. Sidd Padman, the Radiologist Oncologist two weeks ago.  Once aligned the machine starts rotating another quarter turn counter clockwise and shoots the radiation from my back side for about 20 seconds.  The machine then rotates halfway all the way around me back to its starting point and shoots me for about another 20 seconds of radiation.  Then that is it, all done, the techs come back in, lower the platform, help me sit up, and send me on my way to my weekly visit with Dr. Padman during treatment.  All in all the treatment takes about 5 minutes from the time I walk into the room, to the time I walk out.  With actual radiation time only about 40 seconds of that time.

13:30:  I put my chart on the chart holder and have a seat in the chair by the scale.

13:35:  A nurse comes and gets me and leads me to one of the patient rooms.  She goes over everything.  What to  expect, possible skin changes, diarrhea, fatigue, not expected, but nausea, upset stomach, etc, but can call if any severe symptoms or reactions to get some medicine to counter the side affects of the radiation treatments.  She leaves the room, and Dr. Padman comes in right after, and goes over the same possible side affects.  He then goes over the treatment plan again.  Saying for 2 weeks, they are treating a larger area, to hit the lymph nodes around the affected lymph node, just to be safe.  This may cause the diarrhea as it is also hitting my intestines as well as my left kidney.  The last two weeks will be a lower dosage to the surrounding areas and a more concentrated dosage to the affected lymph node.  He will see me again each week, and if I have any questions or issues, feel free to call, and he sends me on my way.

13:50:  I am done and gone!  To repeat the same radiation treatment tomorrow…

I met with Dr. Padman today, and he says this is a very treatable size area to do Radiation treatment on.  He says we will do 4 weeks of treatment, 5 days a week.  He shows me the scans on his computer in his office as well and shows the area he will be treating, and angles he will be treating it from.  It will involve the left para-aortic lymph node, parts of the left kidney, and some of the intestines with the path of the radiation to the area needing treatment.  Following the office visit, they bring me to the back where they do a CT scan of me to line me up for treatments.  Once lined up and Dr. Padman decides how the treatment will be done and the markers needed, they inject me at three spots with tattoo ink to mark my placement for the future radiation treatments.  So when I come in for treatments they will just have to line the lasers up with the tattoo dots, and the machine will then treat me with the predetermined treatment that Dr. Sidd has already saved for me in the computer system.  I had this last done back in 2013 when I did my face and neck, but that also included creating a plastic mask over my head to hold my head and kneck in place for the radiation treatment to those parts, just simple tattoos for this alignment.  All done, I will just wait for them to let me know when treatment will start.

So I saw Dr. Veith today and the uptake is now 19, which is pretty high and the tumer has grown another centimeter in both directions…  It is a little smaller than a baseball, measuring 5.3 cm x 4.6 cm.  A baseball is about 7.3 cm.   He is going to have me follow up with Dr. Siddhartha Padmanabha, or Dr. Sidd Padman for short to see what he thinks about doing some radiation treatment.

The areas that were treated by radiation in 2013, and followed up by the at the time, study drug, Opdivo, in 2015, have not shown any uptake or growing in size, so the thought here is to follow that same process of Radiation therapy followed by Opdivo.  We shall see what Dr. Sidd has to say.

This scan is to follow up from the scan from last year.  Following a not at fault car accident on November 29, 2020, with the CT Scans showing a cracked Sternum as well a larger size of the para-aortic lymph node that needs to be followed up with.  After a denial from the insurance company, say that I did not have any signs or proof of returning cancer, and then a denied appeal that Dr. Veith submitted again with the Insurance company saying I didn’t have cancers, the Insurance company approved the scan.

To follow up on the last PET/CT Scan I had at Tulane that showed something in my abdomen, time for a scan with Dr. Veith at EJGH to see what has happened over the last 8 months.

Just a follow up PET SCAN for Dr. Safah back in New Orleans.  No symptoms, or any issues, just checking on things…

08:30:  I call my research nurse Deborah and ask her questions about the study.

The main reason being is that MD Anderson has been saying they have been getting preapprovals and doing everything right, but the insurance company just isn’t pay at in network levels, like the insurance company said they would and the insurance company points their finger at MD Anderson for not getting the approvals done correctly.  It’s a big mess. So I am done running up a bill at MD Anderson.

To date they say I owe $5,513.19.

I have been going back and forth with them and my insurance company.  Everything was covered up fine for the first 3 months, and then issue after issue with insurance saying that MD Anderson is just scheduling these without getting the proper authorizations, therefore everything is process at out of network levels when they should be processed at in network levels if authorizations were being done correctly.  Insurance went back and corrected what they could, but they stopped because they can’t do it for every visit, MD Anderson needs to do it correctly to get paid.  However something is getting messed up and MD Anderson is still billing me.

I ask my research nurse, as the study said, it would pay for the scans, however the nurse says this far out, the study is not really paying for anything because it is not study mandated scans, and I have been in remission long enough that the study doesn’t really need me anymore, and if it was her, she would stop doing the study and just have the study follow up by phone every three months on my health, and see if there were any long term side effects and to start seeing my local doctor.  The study has the numbers they need from me, not much more I can help the study with.  That makes my decision easier.  I am going to go back to Dr. Safah at Tulane University for my follow ups, in network with no issues, and everything is done in Louisiana again.  No more 1 or 2 day trips for now.  So that is the reason I am done.

She says she will remove me from the study, and cancel all upcoming appointments.

If someone out there wants to help me pay what I owe to MD Anderson, feel free to click that donate button at the top right of this blog, otherwise they are not getting a dime out of me.

You pay insurance for a reason, and when the proper protocols and ways of doing things and frequent request to flag my account to process my preapprovals a certain way and to make sure everything is covered goes ignored, that is not my problem but the providers problem.  I am not paying for what was their fault to do what I told them to do to get everything paid in network.

I spent too many hours, phone calls, and time trying to get to the bottom of it.  Only to be told not to worry about it, it will fix itself, told that they would look into it, and multiple times I had my phone calls, I said calls, calling back 2, 3, 4 times by multiple departments including Patient Service, a Patient Advocate and the Financial Clearance Center to never have them return my phone call.  It seems they wanted to help, but once they looked into my situation, no one would ever call me back or further my investigation into why everything was going on.  Multiple departments left me hanging.  What was I right, and them wrong, they just never decided to get back to me, but ignore me.  Impossible.

So for now I am done with MD Anderson.  Back home for follow ups and scans and tests from now on.

00:15:  Dee and I head back to the hotel room from The Park.

00:25:  Back at the hotel room.

00:35: ZzZzZzZzZ

09:30:  Up I am.

10:10:  Out the hotel room we check.  Then over the skybridge to the main building, then up Elevator B to the 6th floor.

10:19:  I check in at the 6th floor clinic.

10:20:  I get a text telling me to go to the frontdesk to get an armband and check to see if anything else needs to be done.

RANT WARNING: Skip to next time stamp to skip rant:  As usual they ask for my Co-Pay, which I tell them I am not paying until my financial account is straightened out.  Nothing but issue after issue when it comes to billing.  However this time around before this appointment, I was told there was another procedure that had to be done to get appointments preapproved.  It is called a In-Network Benefit Exception since I am outside of the State of Louisiana.  I have been going back and forth with Blue Cross and Blue Shield of Louisiana saying that MD Anderson is not getting preapprovals, MD Anderson said they don’t need pre approvals.  Blue Cross and Blue Shield of Louisiana did pay most of my past bills, but cited that they can no longer do so because MD Anderson is not following the correct method of getting things done before the visits.  BCBSLA also said that they paid the old claims in error, and they should not have been paid, and that I am stuck with all outstanding claims and any claims going forward, and that BCBSLA was not responsible for MD Anderson not doing things correctly.  However after asking about preapprovals this time or possibly not going back to MD Anderson if they couldn’t figure out what had to be done to get BCBSLA to pay what I am paying insurance for, I finally got an answer.  A rep from the Financial Clearance Center called me and said she would call BCBSLA and my case worker to find out what had to be done to get approvals.  After a few calls, she found that the correct term is an In-Network Benefit Exception form that had to be filed.  A few days later, she had the form filed, and supposedly this time around everything should be covered, so its only time to wait and see.  This is the first time in almost 2 years did I have someone actually look into this properly for me and find out the correct information.  I was pushed around, MD Anderson Billing Department blaming BCBSLA, BCBSLA blaming MD Anderson, meeting with the billing department in person and told not to worry about anything, she see’s this all the time and it would work itself out, also trying to talk to an MD Anderson Patient Advocate who started looking into everything for me and then stopped returning my phone calls.  Then finally out of the blue, and almost cancelling my appointments the billing department or reception for the doctor refers my message the proper department to help me follow up with what needs to get done for approvals.

10:30:  I get my weight, blood pressure, temperature taken.

10:35: To the back to see the doc, usual questions are asked by Mike the nurse.  Meds, falls, any changes from last visit, any night sweats, any other side effects, like usual, everything is normal in my world since the last visit.

10:45:  A fellow comes in and goes over the same questions, then goes over the scan results.  The CT scan came back normal, no issues seen, still in remission…

10:55:  Dr. Rodriguez comes in and goes over the scan as well.  Everything normal, no issues seen.  Just normal follow up.  Next scan in 4 months.

11:00:  Done we are..

11:45:  Heading back to the light rail we head.

12:00:  We jump on the light rail heading back to downtown Houston.

12:27:  Off the light rail we get.  We try to go grab some food at Bombay Pizza, but they are crowded with the lunch crowd.  We go to a place we have been before (BirdDog Saint) but it’s mediocre, it was better as Spingbok in my own thoughts, but that’s just my opinion.

13:35: All done with lunch, we walk 2 blocks the the bus stop that serves the 102 bus for the trip back to the airport.

14:05:  On the bus we are.

14:55:  A Bush Intercontinental Airport we are.

15:13: At TSA.

15:35: Through TSA

15:45: Sitting at the gate.

18:40:  Boarding begins.

18:55: Pushback.

19:04: Take-off.

19:48: Touchdown.

20:10: We get picked up by Uncle Vic.

20:29: Home we are.

20:57:  At Outback for their Wednesday special of steak, side, and drink for $9.99.

22:20:  All done back home we head.

22:48:  Back home we are.

22:15: ZzZzZzZzZ another trip done and ZzZzZ I am.

Another trip to Houston, however the PET/CT scans are over, just CT scans now to monitor the size of the locations of where the active tumors were.  If they grow or change size then a PET scan will be ordered to.

06:00:  Up I am.

06:30: To the airport.

06:45: At the airport.

06:55: Through security.

07:00: At gate C4.

08:30: Boarding begins.

09:10:  Take Off

09:59: Touch Down.

10:06: Off the plane, up through the skyway, and over to concourse C.

10:35: Waiting on the Express 102 Bus from the airport to the downtown transit center.

10:50:  On the Express 102 Bus heading to downtown Houston

11:50:  At the downtown transit center.  We hop off the bus, walk the block to the light rail system, and wait for the light rail.

12:00:  On the light rail heading to the TMC Transit Center.

12:15:  Off the light rail at the TMC Transit Center, walking to the Mays Clinic, as the Duncan Building entrance has some construction going on.

12:25:  Walking the skybridge between the Mays Clinic and the Main building.  I have a bloodwork schedules first and second then a scan after that.

12:45:  I check in at the 1st floor location, this is for my research bloodwork, but they tell me they can also pull the bloodwork for my doctor visit as well.

13:30:  I check in again with the first floor, they said that from the time I check in, someone should be there in 30 minutes to take my blood, but the 30 minutes have come and gone. They said they will check again.

14:00:  I finally get called for my bloodwork.  I go into the back and I don’t have an armband because the checkin in counter failed to check for one.  They bring me an armband, which the person drawing the blood needed to scan to see what bloodwork I needed for my doctor visit.  Then after she scans it, she realizes she needs a printer to print up the labels, so after finding a printer, she comes back and takes the 3 tubes of blood.  After that is done, Dee and I head upstairs to the third floor to check in for my scan.

14:15:  I am all checked in upstairs, no line to wait in.  I pick crystal light lemonade as my flavor drink for my.  We sit down and wait.  I pull out my laptop and catch up on some work.

14:30:  My drink is ready, and I get to start drinking my wonderful flavored drink for the CT Scan.  I ask them if they will be accessing my port for the CT scan, they tell me if I have one, if it has been accessed and tested by MD Anderson and is a powerport then yes they will be accessing it.  I tell them good to know, I will be putting on my numbing cream.  So I go put my drink down by Dee and grab my numbing cream and saran wrap, and head to the restroom.  I put a nice nickle side dab of numbing cream to cover the whole area, and then I put saran wrap on top of it to help it adsorb faster, but also helps keeps the shirt clean as well…

15:30:  Still waiting…  Sipping my drink…

16:30:  Still waiting… Drink just about done.

17:00:  I get pulled into the back by the nurse, and we go to the area to start IVs and Port Access.  She access my port.  It hurt a bit.  She can push, but can’t pull back blood.  She tries to find the nurse who usually accesses the ports, but can’t.  She decides to try accessing my port again and I agree. She takes out the needle and preps a new access kit.  She then accesses my port again.  She pushes it in, no pain this time.  She is then able to push the saline and pull back blood through the port.  She said this time she was more on center than last time, so it is possible it was sliding down the port wall and not going into the base of the port correctly.  Also because of the bad position that the needle was going in and possibly tearing some skin was the painful part of the previous needle stick, this needle stick I practically felt nothing.

17:30:  I am lead to a small single chair waiting room in the back until a scanner is ready.

17:45:  The technician comes and gets me.  He has me put on a scrub top with no buttons, since my shirt has buttons, and buttons shouldn’t be on the scan he tells me, as CT scans are a little different than the PET/CT scans I usually get.  He has me lay down on the platform and then positions a foam knee prop under my needs and then he hooks me up to the iodine contrast.  He tells me to listen to the instructions on the machine on when to hold my breath and breathe.  He walks out the room and the scan starts.  It does a full pass, then I can feel the warm rush throughout my body of the iodine contrast flushing through my body.  Hot all over…  A few breathe in and hold its and then breath again.

18:15:  I am all done with the scan.  I put my shirt back on, and he leads me out to a row of chairs to wait for the nurse to flush my port with heparin to prevent any clots in the line.  The nurse orders the heparin.

18:25:  The nurse goes and grabs the heparin from Pharmacy.

18:27:  She comes back, flushes my port, deaccesses me, and I am on my way, no more appointments for today.

18:30:  I am back out in the lobby, Dee, my mom and dad are waiting.  I pack my laptop up, and we head over the other skybridge to the hotel.  I check in.  Room 818 this time.  We go up the elevator to the 8th floor and unpack.  We are going to head to Frank’s Pizza for supper, so back out to the skybridge’s to the Mays clinic down to the street level and walk to the TMC Transit center, when I get there, I realize that I forgot my day pass to get me to downtown.

19:08: My mom and dad head out ahead of us, Dee walks back with me, but stays at the Mays clinic while I speed walk to the hotel room.  I get the card, and back downstairs.  Seeing that some of the doors were locked on my way to the hotel.  I take the elevator down to the first floor, out the backdoor access, and I walk through parking lots back to the sidewalk back to the Mays clinic.  I call Dee and she meets me downstairs by the Mays clinic, we walk to the rail station.

19:41. We get on the light rail.  We take it downtown.  Dee needs to pick up somethings at CVS, so we stop at CVS, then back on the light rail for 2 more stops, then off as the Preston station.  We take a different way this time to Frank’s as the construction is done on this side of the street now.  Everything is shaping up nicely as far as construction in the Houston Downtown area, messy while working, but nice afterwards.

20:22: I get myself a slice of pizza, some chicken wings, and some onion rings.  Everything here is baked through the pizza oven and has great flavor.

21:40:  All done eating, and all of us are back on the light rail.  Houston at night does have a homeless issue, and many beggars hanging out at the light rail stations.  It is better to travel in groups after dark.

22:02:  We are back at the TMC Transit Center light rail station.

22:10:  We are back inside the Mays clinic and walk the skybridge back to the Picken’s Tower entrance.  However the door is closed, so we pick up the phone to alert security to open the door for us to walk through to the hotel.  Otherwise we have to walk close to an additional half mile or more throughout the skybridge, through the main building, uphill on the other skybridge, back to the hotel.  The security guard shows up and guides us through the various doors unlocking them with his cards as needbe.

22:30:  We are back at the hotel. Dee and I head down to the Business Center.  I scan in all my receipts for the past visit for reimbursement purposes, and create the spreadsheet.  I can’t find one receipt, and I figure I left it at home.  I have everything ready otherwise.  I’ll just file these for reimbursement with this trip when I return again on the next trip.  If I return, depending on the ability for MD Anderson to get the insurance approvals and payments, and not process everything out of network and charging me with the balance, but that is another story for another time.

23:30:  Dee and I head back up to the hotel room and drop off the paperwork that I was working on.  We then head back downstairs and over the skybridge to the main building to the park, where it is open 24 hours for a snack before midnight.

23:40:  We arrive at the park.  I have a lasagna and a 7 layer thing they have.

23:59:  Finishing that lasagna…  Another day done.

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

07:00: Out the house.

07:15: At the airport.

08:05: Boarding begins.

08:15: In the plane, not on the plane, I am inside the plane…

08:38: Take off.

09:26: Touch down.

10:22: On the metro express 102 bus to downtown.

11:21: At the downtown transit center, switching from the bus to the light rail.

11:24: On the light rail heading to the TMC station.

11:39: At the TMC Station.

12:00 I check in for my bloodwork at the Mays Clinic Diagnostic Center.

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!

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.

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

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…

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.

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….

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….

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…

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

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…

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

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.

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.

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…

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