10/20/15: Another day at the office.

22:15: I jump in the shower.

22:40: Heading out.

22:50: Stop at Exxon for drink for the trip.

23:10: At the Bus Station/Union Passenger Terminal..My wife and my mom drop us off.

23:25: I realize I forgot my wallet. I need my wallet for my license to get home. I. All moms phone and.my wife finds my wallet in the back seat.  They rush back.  Boarding has started.

23:39: My wallet is delivered thanks to my wife and my mom.  I swear these this drug has me abscent minded sometimes I am finding.

23:42: We are on the bus.

23:45: The bus backs out and pulls off.  We are on our way.

23:59: On the road to Houston.

00:00: My Dad and I are on the Megabus to Houston…

06:20: Megabus arrives at the Pierce Street Station. We wait for the bus to unload and get off.

06:30: At the Downtown Transit Center Light Rail Station. Purchase a ticket fare for $1.25.

06:30: On the Light Rail heading South.

06:55: At the Texas Medical Center Transit Central Station.

07:00: Walk into the Mays Building at MD Anderson and take the sky bridge to the main building and go to the diagnostic center.

07:15: Arrive at the Diagnostic Center and check in.

07:25: Waiting for them to call my name and updating the blog.

07:35: The call me to the back.

07:40: All done, 3 tubes of blood.  I put on my emla cream on my port.

07:45: 1 Hour to go for the numbing cream to take affect.  We head to The Park Cafe and I grab a Peanut Butter Strawberry smoothie.

08:00: We are on the 8th floor at infusion therapy.  I am going to wait to it gets close to an hour since I put the numbing cream on so that it can take complete affect so that I don’t feel any pain.

08:40: I check in at infusion therapy.

09:00: They call me to the back and access my port.

09:10: All done accessing my port I head downstairs to floor 6 to the Lymphoma and Melanoma Center.

09:20: I check in.

09:25: They text me to come to the frontdesk to give me my sheet to fill out.

09:30: They text me to go to the vitals room to get my vitals taken.

09:35: We head to the exam room and go over a few questions.

09:40: Dr. Rodriguez sees me and is pleased with all the results.  So far.  Just need to watch my Hemoglobin as it is slowly trending down.  Nothing to worry about just yet.

09:50: Dr. Rodriguez is all done.  She will page Emily to see me, the research nurse.

09:55: Emily arrives, and she is happy with everything so far as well.  I turn in my 2 weeks symptoms sheet and she gives me 2 more weeks of symptoms sheets to fill out for the next two weeks.

10:00: We head on out and head to the second floor to the Clinical and Translational Research Center.

10:10: I check in.

10:25: I am buzzed to the back with a pager similar to that of a restaurant pager.

10:30: My stats are taken.

10:35: I am put in room 8.

10:45: I am waiting for my drug.

12:00: The wait staff with the complimentary lunch comes around with the lunch sheet for me to pick what I want for lunch.

12:15:  Still waiting for my drug.  The lunch sheet is picked up.

12:20: Catching up on my blog.

12:30: Done catching up for now.

12:35: Lunch arrives.

12:37: The nurse brings in my drug and reviews it with me and my arm band.

12:40: The infusion will drip for 1 hour.

14:00: All done with the infusion.  My port is deaccessed and we are out of there.  We head over to the Rotary House.  Possibly grab some ice cream since we have to 3 before the Super Shuttle picks us up to bring us to the

14:10: We are at the Rotary House.  Time to make a bathroom break before doing anything else.

14:30: The Shuttle Bus driver calls me and tells me that if I can make it 15 minutes earlier, she will be there at 2:45.  I tell her that is fine with me.  My dad gets back and we head down to the front doors of the hotel.

14:45: We get on the Shuttle.

15:00: We pick up the last of 5 passengers and we are headed down to the George Bush International Airport.

16:00: We are at the airport.

16:15: We are through security.

16:20: We are just sitting around waiting.

17:05: Boarding begins.  People that have an issue with Spirit, must not read the how to fly with Spirit.  If you really want to save money, no checked bags or carry on, that will cost you $40-$100 more, bring  a simple small bag 16x14x12 or smaller and it’s free.  Print your boarding pass at home/hotel/kiosk and bring it with you, don’t’ request your boarding pass at Spirit, that will cost you $10 more.  You have enough room.  You won’t have extra room, just enough room. You are going to be on the plane for less than it will take to drive or bus, so what’s the big deal.  You are saving money, and when it’s your money, you gotta save!  Have a backup plan.  For me if the flight is going to be missed or cancelled, I’ll just catch megabus back to New Orleans.  It’s just a small bus ride from the airport back to the bus station.  Houston’s public transit is well organized and very informative including telling you the current stop and what stop is next.

17:43: We push back from the gate.

18:00: We are in the air.

18:40: We are on the ground.

18:53: We are off the plane.

19:10: My wife and mom pick us up.

19:30: We go out to eat.

21:00: We are home.

21:30: ZzZzZzZzZzZ.  I am out!

22:30: Leave the house, heading for the Union Passenger Terminal aka New Orleans Train Station.  Pick up some drinks for the trip at the convenience store.

23:00: Arrive at the train station.

23:30: All reserved seating passengers get in line to load the bus, they check our confirmation number then lead us to the bus.

23:40: On the megabus.

23:52: We pull out of the terminal and on the road.

23:59: On the road in a MegaBus to Houston.

06:50:  I wake up and get up and head to the lab in the main building.  I walk from the rotary house, across the sky bridge, down to the second floor.

07:15:  I sign in.

07:35: They call me to the back.

07:45: All done with the bloodwork.  I walk back to the hotel room.

8:00:  I am back at the hotel room and and get a shower.

8:30: I check out of the hotel.

8:45: We head over to The Park Cafe and have Smoothie King for Breakfast.

09:30:  I sign in on the tablet at the lymphoma center.

09:34: I get a text to go to the frontdesk to get paperwork.

09:44: I get a text to go to get my vitals taken.

09:54: I get a text to door E.

10:00: The nurse takes me to the back. He goes over questions and then leaves.

10:10: The PA comes in and goes over the PET Scan results.  VERY GOOD RESULTS.  Methodically everything is good!  No signs of any active nodes.

10:20: Emily, the study nurse comes in and goes over everything with me.  She is very pleased.  She takes my daily log, and my status review for today.

10:30: Dr. Rodriguez comes in.  She is very pleased with the results.  We bring up Stem Cell Transplant talks again and go over those options for the future.  If we get the next PET Scan in 8 more weeks equal or better than this scan, then I will be in Remission.  At that point that Remission is declared, then we will have 1 more year of treatments following that, then looking forward to moving towards that Stem Cell Transplant.

11:15: I put on my lidocaine cream.

11:25: I check in at the infusion unit on the second floor.

11:30: I go upstairs to the eighth floor and sit in the waiting room for the  access center.

11:45: I check in at the access center.

12:10: The buzzer/pager goes off for the second floor infusion I silence it.

12:15: I get called into the back and they access my port.

12:20:  All done and accessed. I head down to the second floor.

12:25: I give them the buzzer and they tell me to head to the back to get my vitals taken.

12:30: Vitals done, heading to room 13.

12:45: Vitals taken again along with oxygen levels.   They tell me to walk a lap to get my exertion up.

12:50: They take vitals again.

12:55. All done.  I turn on The Monument Men on the TV.  I get hooked up, but waiting on the drug.

13:30: I am hooked up to the line.

14:30: All done with the infusion.  Thy start the flush.

14:35:  All done with today.  I am deaccessed.

14:54: I pay the parking machine.  Exactly 1 day, 8 hours 0 minutes parked.

15:10:  We turn onto 288 to 610 to head home.  On the road…

21:30: We get off of the Interstate.

22:00: We are home after refueling and switching vehicles with my sister.

23:59: Another successful road trip, and this time good news!  Keep on trucking and get all this cancer stuff behind me!

1:45:  We pull out of Danny and Clydes @ Clearview and W Napoleon and onto I-10.

6:50: We pull into Parking Garage 10 @ MD Anderson.

7:10:  Check in with Laboratory.

7:25: I am called into the back and have 4 tubes of blood drawn.

7:30: All done with lab.

7:40: At MD Anderson Cafe. I grab a water because I can’t eat anything for 6 hours before the scan.

8:10: All done at the cafe, time to head to the Mays Clinic building. We walk the skybridge which is about 1/2 miles from the main building.

8:15: We sit down at the Pet Imaging / Nucleur Medicine center. I’ll wait to 12:00 to check in as my appointment isn’t to 2, just have time to kill.

13:00: I check in.  6 hours since I drank my diet Dr. Pepper and took my synthroid pill.  They give me paperwork to fill out, I return to my seat and fill it out and then return the clipboard, then back to my computer.

14:00: They call me to the back.  They give me a locker, I put my Dog Tag aka Medical Bracelet and my watch in the locker.  They tell me to go to room 15, but it is occupied, and then I am moved to room 16.  I have a warm blanket thrown over me and told the nurse will be in shortly.  The nurse arrives and tries to start the IV.  She doesn’t feel anything in my right arm, so she tries my right hand and blows the vein.  I show her where they stuck me earlier for my bloodwork, and she attempts to go a little lower, and is able to get the IV started.  She test the line and no pain, and I taste the saline, so everything is good to go.  She goes and gets the Radioactive Glucose and puts my dosage into the IV and pushes more saline to give me all of the glucose.  She tells me I will now lay in the dark room and wait for about an hour till someone comes and gets me.

15:00: The tech comes and gets me, has me use the bathroom and then leads me to the platform to lay on, puts the support under my knees, raised the platform, and lines the laser up with my eyes so that that the scan goes from my eyes to my knees.

15:30: Scan all done.

16:00: We check into the hotel room.

17:00: We go to the The Oaks.  My meal for the entire day, and I eat well.  Appetizer, 3 sliders, Entree, 12 Oz Ribeye Steak, Onion Strings, and Garlic Mashed Potatoes, Desert, Molten Brownie with Ice Cream.  I haven’t eaten in 24 hours.

10:30: I go for a walk, I want to find the 24 hour cafe.  I find it.  They have personal pizza’s, starbucks, smoothie king all in one offering.  I am definitely returning here for breakfast, and lunch.

11:00: Blood Glucose of 111, so all good there even after that hefty meal and plenty of sugars in the ice cream and brownie.

11:45: Updating my blog.  About to go to sleep.

11:59: All done… Goodnight!

01:20: Pull out of Danny and Clydes at Clearview & I-10.

06:15: Arrive @ MD Anderson.

06:25: Check in at the lab to get my blood test done.

06:45: Called to the back for blood draw.

07:00: @ Anderson Cafe for breakfast.

07:45: Check in at the Lymphoma and Myeloma center for my 10:45 appointment.

08:00: Texted to check my wristband and initial well being paperwork I need to fill out.  Just waiting in the waiting room.

09:00: My vitals are taken.

09:30: I am called into the back.

10:00: I see Dr. Rodriguez. Everything is good to go. Some alinpurinal for high uric acid is ordered. Up my magnesium dose from 400 to 650 every night. Also will call in a antibiotic for my cough that is starting to get a funny flavor when I cough.

10:45: Emily sees me, gives me my new homework survey sheets and collects my current survey. Drugs are ordered and good to go.

11:00: Done with the doc appointment.

11:20: Check in at research for my infusion on first floor.

11:30: Check in at the portocath on 8th floor to get my port accessed.

11:45: Called to the back.

12:00: Port access complete.

12:15: Back by infusion.

13:00: Check to see what’s going on since my infusion appointment was for 12:15. They tell me I need to go to the second research infusion center on the first floor that is a little over a month old.

14:30: Called into the back.

14:50: Blood drawn.

14:55: Infusing started.

15:55: Infusion complete.

16:10: Port flushed and heparin put in port and needle pulled.

16:30: Bathroom break pay for parking, and out of garage.

16:45: On the road…  610 Traffic East and North was horrible as it was rush hour.  Took about 45 mins to go 10 miles.

22:30: We get off @ the Causeway exit.  Fill up my sister’s car with gas, return it to her house and then head home.

23:15: Back home…  ZzZzZzZzZzZ

08/26/2015: 3rd Treatment @ MD Anderson

1:15: On the road to Houston, TX.  I am driving.

6:30: We arrive at MD Anderson.  All parked in Parking Garage 10.

6:45: I sign in for lab work.

7:00: All done with lab work, heading to the Lymphoma Center.

7:10: At the Lymphoma Center.  I setup my laptop to check my appointment times on the MyMDAnderson website and put them into my Outlook Calendar so that my phone is updated with the schedule and locations.

7:30: I check in at the Lymphoma Center.

7:35: They tell me that the doctor will not be here to 1.  So that I should come back and check in closer to that time.  I told them that my infusion is for 12:00.  They said the infusion should have been moved to after I see the doctor as the doctor’s orders are needed before each infusion.

7:40: I return to my laptop, setup my Out of the Office Outlook message, and then update this blog.

8:15: Done updating, heading down to grab a bite to eat since we have time to kill.

8:30: Chik Filet for breakfast.

9:00: We head to the gazebo area. I have my Mein Kampf by Adolf Hitler to read.

10:00: I put on my Lidocaine creame to numb the port area and put saran wrap over the area. Then back to the gazebo area.

10:50: We head over to the clinic area.

11:00: I check in at the clinical area.

11:15: Clinic tells me they can’t do anything for me since I have not seen the doctor for me and they do not have any orders for me.

11:20: I head over to the Cath lab to get my port accessed to save time.

11:40: I check in at the Cath lab.

12:10: Cath lab calls me to the back and accesses my port.

12:25: I check in at the Lymphoma Center again.

12:40: I get my vitals taken.

12:55: I get taken to the exam room.

1:05: The fellow sees me.

1:15: Doctor Rodriguez sees me.

1:25: Emily the research nurse sees me.

1:35: All done with the doc visit the orders are in, time for me to go get my infusion.

1:50: I check in at infusion.

2:10: I am taken into the back and prepped, the vampire comes in and takes 8 or 9 tubes of blood from me.

2:50: My drug arrives and is hooked up and thr infusion begins.

3:20: I get some pizza delivered by my mom and dad from the MD Anderson Cafe.

3:50: Drugs all done. I am deaccesed.

4:00: I leave my room and we head to the car.

4:15: We are in the car hitting rush hour traffic.

4:30: We get to 288. Time to fight traffic.

5:19: I fill up the tank for the return trip home at Buc-ee’s. $1.99 per gallon.

10:30: We make it home.

11:30: In bed watching TV, will be out soon…

11:59: ZzZzZzZzZzZzZzZz

08/16/2015:

I get a good 8 hours rest. Then get up, eat, still sluggish. then 3 hours later, I am taking another 3 hour nap.

So yes the fatigue is starting to set in.  Other than that, everything else is going well.

08/15/2015: I can feel the fatigue starting to set in.  I sleep later than usual, and there is some resistance and not the just jump out of bed and ready to go feeling.

Other than that a normal Saturday.  Setting up Maps for Gaming with the Clan on Saturday Nights doing some Call of Duty 2…

1:15: We hit the road, I am driving.  My wife, dad, and mom are along with me for the trip.

6:30: We are in the parking garage.  5 hour 15 minute drive.

6:40: I check in at Lab for then to pull my bloodwork.

7:00:  All done.  We go to the Anderson Cafe for breakfast.  I get a chicken biscuit from Chik Filet.

7:40: I check in on the iPads they have by the frontdesk.

8:00: I get called to the back for vitals.

8:10: I am on my latop, checking on a few things for clients and also catching up my blog.

09:00: They take all of us into the back, the nurse goes over a number of questions.

09:20: The fellow comes in and ask ne questions about pains, swellings, issues, and such over the past two weeks. He listens to me breathing and my heart. He also feels for lymphnodes. He doesn’t feel any.

09:40: Dr. Rodriguez sees me. She goes over everything I told the fellow. She says she will try doing an anti inflammatory to prevent the swelling and hopefully the pain from the tumor flare.

09:55: Emily comes in and finishes up with Dr. Rodriguez, then collects my journal logs she gave me to fill out everyday on bow I feel, symptoms and such. She will add an Aleve to the post infusion to hopefully prevent the pain experienced last time on the drive home.

10:05: I am all done with the lymphoma center. Time to head to the pharmacology area where they will do blood work for the study and also access my port and start the second drug infusion.

10:25: I check in at the pharmacology area.

10:45: Waiting for them to take me back.

11:30: They take me into the back.

12:00: The nurse accesses my port.

12:45: They draw my blood.

12:50: They start the infusion.

1:50: The infusion is done.

2:00: Potty breaks before hitting the road.

2:30: Back on the road.

8:30: Back home!  No pain on the road this time around.

11:00: ZzZzZzZzZzZz!  Don’t take long to fall asleep on infusion days!

07/30/2015:

12:00: Pain!  I do not have any pain in my back it is strictly my abdomen.  I just took an oxycodone.

1:00: The oxycodone is not helping at all.  It is a gaseous feeling, but nothing is helping.

3:00: Still in terrible pain.

5:00: My abdomen is still hurting me.  I take some lactose.

6:00: The lactose helped enough to make the pain not be stabbing.  The pain subsides enough for me to finally be able to fall asleep.

12:00: I wake up with no pain.

13:00: Emily, the research nurse, calls me and checks on me since we tried contacting them.  She asked me to explain the pain, and I did.  She said that the pain is most probably being caused by the tumor flare, the tumor’s reaction to the first drug infusion.  She says the abdomen pain correlates with a tumor in the upper abdominal area that is probably flaring and causing pressure and pain.  She wants me to call her back tomorrow and check in.

14:00: I make it into my office.

19:00: I head home from the office.  No pain since this morning.

19:15: Home sweet home.

20:00: I doze off…  Goodnight!

12:00:  On the road again back to Houston, TX for MD Anderson.  First stop will be though, Blue Bayou exit to pick up my sister!

12:30: Leaving the house again. Forgot my numbing cream for my port access, so turned around and picked that up.

01:30: We pick up ny sister from her house near Blue Bayou near Baton Rouge, and I take over driving.

05:45: We arrive at MD Anderson.

06:07: I sign in at Lab to have my blood drawn for my scheduled tests today.

06:10: Waiting…

06:25: The nurse takes me to the back.

06:34: All done 4 tubes of blood taken.

06:35: Off to the Lymphoma and Myeloma Center, Elevator B, Floor 6…

06:40: At the center, no one here, and lights are still off, so, waiting….

07:00: The lights come on, oh boy.

07:10: I check in.

07:20: Waiting….

07:40: The nurse comes and gets me and takes my vitals.

07:50: I am back in the waiting room.

08:30: I am called to the back. The nurse talks to me.

08:40: The PA comes and talks to me.

09:00: The doctor comes and talks to me.

09:15: Emily, the research nurse comes and talks to me. We go over results with showing hyperthyroidism and preexistance of gout. All pills to adjust all that. The doctor and she says that the thyroid problem is most likely related to past chemo. She goes over a number of things and shows me a packet she has for me that I need to bring everytime and start filling out today and daily. There is a questionnaire that I need to bring back today, and other questions to be repeated at certain intervals during the trial to evaluate how I am responding to the drug not only cancer wise but physical wise. She will call my local CVS pharmacy amd get my medications ordered there. She sends me on my way. She will order the test drug and get the doctor to sign off on it so I can get it today. In the meantime time time to head to the Infusion Therapy for them to access and document my port so that it can be used here at MD Anderson, so there we head.

09:45: I check in at Infusion Therapy, I then ask them to hold off taking me until the numbing cream has taken affect, the nurse there said that is fine, for me just to let her know when I am ready, so I go to the bathroom and apply the numbing cream along with the saran wrap. In the meantime I fill out my questionnaire for today that Emily gave me. My dad and I then go.back to the third floor and turn in the questionnaire. We then walk around the building checking out all of the elevators and locations.

10:30: We come back to the Infusion Therapy and I tell the nurse that I am ready. She tells me she will let them know.

10:45: They call me to the back. The nurse asks to see my port card. I give her the packet and she finds the card and obtains the information she needs from it. She then feels my port and then accesses my port. She flushes it and gets a blood return with no problems. She then drips some saline into it with no problems either. She says everything is good to go and she puts the protective clear plastic over the needle in the poet to hold it in place. All done she says.

11:05: We head downstairs to MD Anderson Cafe. I get a cheeseburger.

11:55: I check in at the clinical and translational research center for my bloodwork for the trials and my trial drug.

12:15: Sitting here waiting, just updating the blog from my phone.

13:30: They call me in the back.  They take my stats again.  Then they send me to room 7.  I sit in the bed and make myself comfortable.

13:50:  The nurse tells me the procedure.  They will draw my blood through my port accessed.  They are currently waiting for the drug to be retrieved from investigational therapy, then send upstairs to pharmacy, then mixed up and sent down to me.

14:00: They want my oxygen after some exertion so they make me walk around the hall for one lap, then take my oxygen level, it is 100%

14:10: Just waiting…

14:30: The vampire comes in and takes 11 tubes of blood from me.

14:40: The nivolumab is hung and administered through my port, just like my past chemos.

15:40: My infusion is done.  I am deaccessed and sent on my way.

16:00: We head to Cafe Anderson and grab a few things for the road.

16:30: On the road heading back home.

19:00: I start with upper and lower back pain while on the trip home.

19:30: The pain is getting worse and worse.

20:00: The pain now includes my abdomen.

22:00: We drop off my sister.  I take a Zofran.

22:30: The pain in my back is subsiding.

23:00: I am still in pretty bad pain in my abdomen.

23:59: I take an Oxycodone, still in pain.

01:45: Leaving the house, driving to Houston, MD Anderson.

02:15: On the road after picking up Uncle Victor for the drive back since I won’t be able to drive back after anesthesia.

07:15: At MDAnderson. Nice 5 hour drive from New Orleans, no construction slowdowns or traffic headaches. Quick bathroom stop on the way in.

07:25: Check in at Laboratory for bloodtest on the second floor.

08:05: A nurse calls me, asks me my record number and puts on my ID bracelet. We walk to the back and she sticks me and takes my blood, 7 tubes worth. She then gives me a urine sample cup and I am expected to urinate some more after I just had my bathroom stop.

08:15: All done with labs. Onto my next stop.

08:20: I check in at Pharmacology Sampling on the first floor.

08:25: A nurse checks with me. She tells me they will draw labs. I tell her I just had labs drawn, she said this is for the test drug. In the future I should coke straight to them and they can draw all labs needed by the sampling and the doctors, so no double sticks. I’ll keep this in mind for next time. So I continue to wait to be called back.

08:35: I am brought back. The nurse sticks me twice on my left arm with no luck, and the she sticks my right arm once and gets it and takes one tube of blood.

08:45: All done there, time to head to third floor near elevator E for my bone marrow biopsy.

08:57: I sign in Pre-OP Anaesthesia.

9:00: I am sitting in the waiting room and fill out my paperwork.

09:07: A nurse comes and gets my vitals.

09:15: Done with preps, now just waiting again…

09:35: A nurse comes and gets just me brings me into an adjacent room and goes over my paperwork.  She tells me that she will start an IV.  She has to start the IV in one of my hands as the anticubical area is not good for this procedure as one will be laying down on their stomach with their head on their hands and therefore arms will be bent.  She gets a vein in my right hand but can’t push it all the way in.  She tries floating it in by starting the drip while trying to push in but that didn’t work either.  She then realizes that she didn’t put the cap on, so she undoes the line and puts the cap on the iv that  only allows the fluids to flow one way.  While she does this, I know it’s going to get bloody, so I don’t watch her unscrew the line then screw on the cap.  She then cleans up the mess.  The doctor and crna is ready for me. So a nurse grabs the bag of saline and walks me over to the room where the procedure will take place.  It  is a simple room, nothing fancy, just some medical equipment.  They tell me to lay down on my stomach and to remove any buckles or anything else that is holding my pants up.  I have elastic shorts on, so no worries there, so I lay down.  The doctor then tells me that he is going to prep me, and not start working on me just yet.   He pulls down my pants just a little bit so he can access the back of my hips and feels around and then marks them.  The CRNA is talking to me.  I ask him if he is going to give me a cocktail, and he tell me no, that the Propofal will take care of it for me.  He tell me let’s get started.  he tells me it is a white liquid and I may feel a burning sensation as it enters my vein.  Sure enough I see the white stuff in the IV tube and then I feel the burn but I also notice white stuff leaking from my hand.  I tell the CRNA this, and he says that it should be OK.  The drip was not leaking so I have good access, he will just monitor it, but I should feel it any second now.  Sure enough. I start feeling it and don’t fight it, I have been up all night, time for a good rest.

If anyone is to have a bone marrow biopsy, I strongly suggest sedation and being put under.  No pain whatsoever, excerpt for what you feel a little after, during is not a problem at all as you get a really good nap!

10:30: We are done.  I wake up, they have me sit up slowly and then help me in to a wheel chair, which I am to remain in for at least the next hour.

10:40: We are on our way to the Mays Building as that is where I need to go to get my Bone Density Scan.  Uncle Victor is wheeling me around in the wheel chair.

11:10: We check in at the front desk for Nuclear Medicine.  I shortly after doze off in the wheel chair in the large waiting area.

12:00: They call my name.  Uncle Victor wheels me to the back.

12:20: The nurse wheels me to the room, and has me lay down flat on the table to get scanned.  She first puts something under my feet and velcros my feet so they are turning inward.  She tells me that this is to open up the joints in my hips for the scan.  Once that is done, she then has me put my legs up on a block so as to flatten my lower back against the table, and then she runs scans of my spine.

12:35:  All done.  The nurse rolls me to an area where I can have the IV taken out of my hand.

12:45: All done, time to roll back over to the main building, we are done and time to go home, but first we are going to grab a bite to eat at the MD Anderson Cafe on the first floor of the main building.

1:05:  At the MD Anderson Cafe.  We decide on quick and easy Chick-Fillet chicken sandwiches.

2:00:  Back to the car, time for a trip home.

7:15:  Back home, not bad of a drive, a few batches of rain and other batches of traffic hitting cities at rush hour, but other than that, not bad at all!  I catch a few second ZzZz’s here and there on the way home.

10:00: ZzZzZzZzZzZzZzZz… Long day!

07/17/2015: Returning Home

00:00: My dad is getting tired of driving, so we jump off the Interstate a little after Lake Charles, and I take over driving.

02:30: We pull into the driveway.  Trip over.  We unpack the car.

03:00: Time to go to bed… ZzZzZzZzZ

10:00: I’m up, slow moving, but up, still a little tired.

14:00: I head to my office.

07/16/2015: MD Anderson: Testing

06:45: I am up which is early for me.

07:00: I take a trio down to The Oak restaurant to check out their breakfast buffet.  Not bad, we will have to try it in a little bit.

07:15: Shower time for me.

07:45: Breakfast time, good stuff, bacon, Texas shaped waffles, biscuit, potatoes, eggs benedict.  Blah eggs, eggs have never been the same since my Stem Cell transplant 2 years ago, I don’t really touch them.

08:45:  All done eating.  Just following up on a few emails and catching up today’s blog.  I have a CT scan later today.

09:00: I take a nap.

11:00: I’m up, time to gather everything to check out the hotel.

11:53: We checkout.

12:15: We loaded the car with the bags, and then to Diagnostic Imaging C.

12:30: I check in and tell them I am very early, they say that is ok, they can’t promise that I will be seen early, but I can sit and wait just in case. They give me some paper work to fill out related to the CT scans. I answer the questions and select that I want crystal light lemonade to have my contrast mixed into.

12:45: I turn in the questionnaire.

13:30: They give me my lemonade contrast. I need to drink the top of the plastic cup in an hour and save the bottom for when they call me back.

13:30: All done my drink except for the bottom portion, just waiting for them to call me back.

14:40. They call.me to the back and review the paperwork I filled out. Then I am lead to the IV room where I sit and wait.

15:00: The morning crew just left and there are only 2 IV nurses while there was 5 when I first walled into the room. IV started ans flushed with no issues on the first stick.

15:15: I am back in the waiting room.

16:30: Still waiting…

18:15: They call me to the back. Sit me in a room and I wait some more.

18:45: They get me and bring me into.the room with the CT scan. They scan me.

19:10: All done my scan.

19:20: Back to the car.

19:30: On the road again heading back home.

19:45: We stop to fill up for gas for the return trip, also hop across the street to Whataburger for some food for the trip home.

20:15: Back on the road.

21:15: We run into Road Construction around Beaumont.

22:15: Out of the road construction traffic after some local street driving around listening to the GPS when we should have listened to the GPS to avoid the construction in the first place.

23:59: Still on the road…

07/15/2015: Next Stop MD Anderson

0:10: We pull out of the Driveway heading to Houston, TX.  My Mom, My Dad, and I.  My Wife had to stay home as she has work Friday morning and a double on Saturday, and we do not know what day we are returning.  They said 5-7 days, but they only have me an agenda for Wednesday and Thursday, but can’t take the chance of her missing work or no job to come home to.  My Wife was very upset she couldn’t come, but it is what it is…. Hopefully there will be other days My Wife will be able to attend with me.

01:02: My phone screen besides blogging…

03:42: Hello Texas

06:00: We arrive at the medical park after 2 short stops for resting and waking up.

06:20: We are parked.

06:30: We are in the main building of MD Anderson. Potty break after a long trip.

07:00: I check in as a new patient and they tell me they that they will let registration know.

08:00: Lana with registration gets me registered, forms signed, items scanned, etc. She is a great and friendly person greating new patients.

08:30: I get my wrist band and take a seat and wait for my name to be called to see the doctor and the nurse.

09:00: I am taken back to get my vitals, height, weight, temperature, etc. The nurse needs to find someone to verify the height and weight since it is my first appointment. 6’2 251.

09:10: Back in the waiting room.

09:30: I am called to the back. The nurse goes over a number of things with me and has me sign more consents, then another nurse comes in and has me sign more consents, then a fellow comes in and explains to ne a number of things about the study drugs, then the doctor comes in and explains more and checks me out. Then the study nurse comes in and foes over all the aspects of the study drug and everything. I sign another consent to participate. Now I just need to be worked up to see if I am compatible for the study and meet their requirements.

11:40: We are done with all aspects of the appointment and consents now I need to go get my tests. I first sign up with the front desk so that I can get an account with mymdanderson so that I can contact doctors and nurses and follow up with them and also see appointments and such populate.

11:45: Down to the second floor by elevator A we head. I need to get my bloodwork done.

12:00: I fill out the sign in form and see there is a place for both lab work and ekg, both of which I need today so I check both and turn in my form and sit down to wait for my name to be called.

12:25: I am called to the back, we form a line, give our labels for our blood tubes and walked in a line back to the lab area. The area has at least 40 seats and they seat us and the nurses come around, sticking, getting blood, then bandaided. I fill 4 tubes and she hits me on the first stick, what more can I ask for.

12:33: I am done with the bloodwork, I return to the frontdesk where I give them a card they gave me to come back for my ekg after my blood was done. She asks for my medical record number, I don’t know it yet so I read it off my arm band. She then instructs me to sit down in waiting area B, so here I am waiting again.

13:10: My name is called for the EKG. I am brought to the back, told to like down, unbutton my shirt, and they the nurse puts at lease 8 circle leads on me and then hooks up the wires to the leads. She then runs it for about a minute and then pulls off the wire and then pulls odd all of all of the sticky circle leads.

13:15: All done. Time to head on over to imaging A which is located to elevators C. Just follow the maps on the wall that show the way.

13:20: Check in at Diagnostic Imaging A.

13:24: They call three of us, give us scrub tops wo make sure we have nothing in out pockets etc and makes taking xrays nice and easy.

13:27: Back in the waiting room waiting. I move closer to a wall outlet so that my phone can charge.

13:37: My name is called time for my chest xrays. This is to verify the port placement and to see if they can use it for the study.

13:42: I am all done my xrays. The tech says I am free to do whatever now.

13:45: I take off the scrub top and put my shirt back on. We walk from the Imaging A past elevators C, B and A. We walk over to the rotary house but can’t check in. We stop at the gift shop, and then decide to take lunch to kill some time since we can’t check in till 3.

14:00: We eat at The Oak Restaurant. I have a Reuben and a side of fries. Amazing. I have also been up for over 24 hours, blah, dragging.

15:00: We go to check in, but we wanted to see if we could get a cheaper room because all they have left at time of booking is single queen with kitchenettes and those are more expensive than double queens wih kitchenettes. We say we will wait to see if someone canacels or doesn’t show up. We walk back to the skywalk between the rotary house and the hospital main building. I spit a wall outlet and my mom says she wants to sit and rest a while. So we let her do so. My Dad wants to go check out the post office and gift shops for postcards. Unfortunately the post office closed at 3. We walk around the building trying to find the closest west side entrance so we can walk to the light rail line. We finally go out the front door and walk east and walk between about 5 city blocks to the rail. We then walk from one station to another and watch as the rail goes under the street. This is our version of the streetcar, but much heavier, more industrialized and faster too, aslo can sit 3 times as more people it appears. We then walk about 3 blocks to the back corner of the MD Anderson and walk about two blocks up the side. There is construction going on on this side and we can’t access any side entrances so we must walk back to the front entrance. We then walk back to the skywalk and sit down in the AC and talk its 95 degrees outside but doesn’t feel as bad because of less humidity. However it is back to be sitting down inside of the AC again. We talk a little longer and my mom disappears and returns with ice cream. Yummy.

After that my dad and I walk back to the car and get a few things. Since we are only going to be staying 1 night no need to bring a the bags in. We get our stuff.

18:00: We check in at the Rotary House a hotel run by the Marriott for MD Anderson.

18:30: We are upstairs in our room, and its not long before I am out. ZzZzZzZzZz.

21:30: I wake up and decide to go take a stroll around. I grab my Dads camera and go take pics of a number of places that I was earlier today and just shots in general.

22:05: I return to the room and take the time to update my blog because I left off just before the xray was taken my brother in law is looking to see what happened the rest of my day, so here it is updated. Now back to just taking it easy relaxing around the room before I doze back off to sleep.

Didn’t take long to fall asleep and slept all night I did.

07/11/2015: Garth Brooks

My wife is a big Country Music Fan and an even bigger Garth Brooks fan.  So I took her to the concert with Garth Brooks and Trisha Yearwood.  It was a great concert: I listen to all walks of music so I knew all but three songs the entire night.  Great Concert.

We sat behind Stage Right in the New Orleans Arena.  No seats where blocked off, sold out crowd.  It takes 2 hours to flip the Arena from the end of one sell out crowd to another sell out crowd.  The 7:00 show ended at 9:30PM. We had to wait to the previous show exited before being allowed in.  Exiting took about 45 minutes.  Filling took about 1 hour 15 minutes.  We were still outside at 10:30, the scheduled start time for the second shoe.  The second show didn’t start to 11:30, and didn’t end to 2:00 AM.  Luckily my Dad dropped us off and picked us up so no worries of fighting traffic and parking on the way in or way out.

I’ll get better images posted when I get back to New Orleans.

07/10/2015:

I get an email from MD Anderson telling me to log into my patient account on the MD Anderson website and when I log on, I see the additional test ordered.  A CT Scan, a bone marrow biopsy, and a bone density scan.

07/09/2015:

16:06: Lana at MD Anderson called me and left me a voicemail message to call her back so that she could get my initial appointment scheduled.

16:22: I call Lana back.  She asks me if I prefer July 15, 2015, or July 20, 2015.  I told Lana, the earlier the better, she said July 15, 2015 it is.  She said she would be emailing me a checklist for my first appointment.  She said that my Insurance company for approved for in network coverage for the initial consultation and test to determine the next level of treatment.  She said that she was able to contact Tulane and that Tulane would be shipping her my biopsy slides for them to review.  She did say I needed to get a copy of my latest PET/CT scan on disk and bring that with me.  She emailed me all of this including my registration time of 8:00 AM on July 15, 2015, and my doctor appointment following that at 9:00 AM.  Lana said that I should plan on being there from 5-7 days, but it could be a lot shorter than that because I have had recent scans and biopsies and such for them to base their evaluations on so that could cut my time needed to stay there significantly.  We shall see!

MD Anderson so far is very organized and give you your schedule well in advance.

I have new patient registration, my doctor appointment, a blood test, a chest XRay, and an EKG test to undergo on the first day there.

07/02/2015:

09:00: I arrive to the Tulane Cancer Center.  I check in, and sit and wait.

09:30: I am brought to the back for bloodwork.

10:45: It’s my turn to be seen by the doctor and she walks into the room.  My mother and my sister are both there, my sister was not a match to be the Stem Cell Transplant donor.  Dr. Safah is disappointed in the PET/CT results.  She said that the brentuximab is not doing it’s job, the cancer is showing a mixed response to the chemo.  Some is reacting to the chemo, some is not.  There are two spots of concern, one in the chest and one in the abdomen that are not showing any reactions to the chemo.  She said there is nothing else that she can give me to try to control and fight the cancer, and that she would be referring me to MD Anderson.  She needed to get the cancer under control before proceeding with the second stem cell transplant, but since she cannot get it under control, she can not move forward with the stem cell transplant because it would not yield the same results and be an answer since there is more disease, and it is not pushed into control.  She said that there is a trial/study drug going on at MD Anderson that is looking promising and she is hoping that they can use that drug which is known as nivolumab, can be used on me to see if that will suppress the cancer, and then possibly follow up with a stem cell transplant after that.  However, just as before when Dr. Veith referred me to Dr. Safah, Dr. Veith was no longer in the driver’s seat, now Dr. Safah is referring me to MD Anderson, MD Anderson will now take complete control of my health.  Just one step at a time, hopefully this time better results will come about.

PET/CT Scan Results:

11:45: We are done.  The office said they would follow up with MD Anderson with all of my information, test results, history, etc.  That’s it.  No more appointments scheduled with Tulane, MD Anderson is now in the driver’s seat.

12:30: We arrive at Bravo!  My wife just started working as a server here, so we request her.  If you are going there, feel free to request for her to be your server Diana (Dee).

1:45: We are done, and head home where I jump in my car and head to my office to start to work on a few things, and to start prepping things for remote work from Houston when I am traveling back and forth and getting treatments and such.

6:00: I head back home.

Just the end of another day.  Another step to be taken, but one day at a time and one step at a time is my way of looking at things.  Baby steps…

07/01/2015:  PET/CT Scan #11

Today’s PET/CT scan is scheduled for 1:00 PM, so I don’t need to be to the hospital till 12:30 PM.

9:00: Up and working on some ongoing client issues pertaining to emails.

12:10: Head on out to Tulane Hospital.

12:30: Get there and check in, sit down for a minute and called to be lead downstairs.  Another lady and I are there, she got there before me but her scan was after me, she was an older lady, so let her go first when they asked me if I minded if she could go ahead to get out.  Fine by me.

12:50: We are in the trailer for our scans.

1:20: I am injected with the radioactive glucose.  I am radioactive now and will be for the next 6 – 9 hours.

2:20: I am lead to the other side of the trailer, lay down on the moving table and it begins.

3:00:  I am done with the scan.  My wife and I head on back.

3:20: At Payless picking up shoes for my wife’s job.

3:50: At my wife’s job for them to check out the shoes.

4:10: We are home.  I am back on the computer working on the previous issue.  I still haven’t eaten anything but a small snack bag of chips.  Can’t eat anything before the scan, so almost 20 hours since I have eaten.  Just waiting for my dad’s ability to go out this evening for supper, try to enjoy a meal, since I have chemo tomorrow.

06/17/2015:

Another day running around taking care of clients.  While at one client I get a call from the Transplant Coordinator.  Unfortunately I was misinformed and the possible match that is in the US is a 9/10 match and NOT a 10/10 match.  Still good, but not the perfect match…  The story of my life eh?

I am ready to move forward and get this next obstacle of life out of the way and get back to not worrying about the little things and what’s coming up next medically from day to day and just be able to enjoy working and not micro managing a schedule that includes tests, appointments, scans, chemo, etc.  Blah.

Oh well back to doing some work…

06/13/2015:

10:00: Another Saturday morning waking up to a client’s phone call.  I remote in and help the client with the issues he is having with his emails.

11:00: Out into the backyard I venture where my Dad has completely cleaned out the pond.  I can’t help too much with this because of the diseases/bacteria etc found in water mixed with fish, birds, and other animals that use the pond.

1:00: Back inside for some Brisket Sandwiches.  Back to the computer for some ins and outs work.

5:30: Off to Dinner at Ye Olde College Inn.  What great stuff!  First time visiting here, I love their Chicken Fried Steak PoBoy which is really some fried veal on french bread.  YUMMY!  Definitely a place to come back to.

6:45: We got our parking place.

7:00: We are at the Saenger, and even though it says doors are at 6:30, the doors have not opened yet and they don’t until 7:10.  No big deal hanging around standing up inside a building with A/C is fine with me, at least we are not standing outside and sweating.

7:30: Show starts, and a great one it is I enjoyed the entire show!  What a great bunch of guys.  Ha, I’d love to join them sometime.  You gotta laugh at life and everything in life.  Being too serious all the time creates too much stress and worrying about every little thing is not worth it.  Life is too short, just enjoy it!  These guys help us enjoy it and remind us of just that.  Chemo Yesterday, Good Hard Laughs Today!  #truTVjokers

9:10: Show over, great show though!  I’ll be back next year!

9:45: Back at home, and loading up for some Call of Duty 2 with my clan buddies from across the US.

11:59: Still gaming!

06/12/2015:

08:45:00  On the way to Tulane for Chemo…  I just don’t get it.  People and their driving and their road rage.  Today for instance, I had a car who decided they didn’t want to wait in line for the left two turning lanes at the red light, so they skip the line and then get right next to my car and turn their wheels so they can force themself right in front of my car, less than a foot from the front of my car.  I just ignore them drive round their car and not let them in because I have already been waiting in line for 5 minutes and I am not going to catch another redlight because they don’t want to wait their turn.  They proceed to cut off the person behind me having them slam on their brakes, and then swerve around multiple cars just to get on side my car and curse me out and speed up cutting off the car in front of me causing him to slam on his brakes.  I just don’t get it.  If she is in that much of a rush she should leave earlier, not try to cut people off.  Some people think the world revolves around them and they own the road.  Cutting people in line for because you don’t want to wait your turn is just a pet peeve of mine.  If I miss a turn or don’t feel like waiting, I’ll go another route which will still get me there, not do a last minute cut off for people that have been waiting.  Next time something like that happens, I’ll have a license plate for you, LOL.  I am sure she had to get to her Chemo treatment or something important… Blah,  Rant over…

9:00: I sign in at the front desk.

9:20: I am taken to the back. 252 weight, 98.2 temp.

9:30: Accessed and Blood Drawn for tests.

10:25: Good Premeds… Benodryl, Cortizone, Tylenol.  Loopy Time 😛

11:15: Infusion time.  I am verified, and they hook me up for the Brentuxmab.

11:45: Infusion done, flushing time…

12:00: Flushing done…

12:05: Deaccessed, time to head on out…

12:10: I check Ticketmaster.com for tickets to Impractical Jokers performance at the Saenger Theater in New Orleans.  They have seats available together for four people, so I am going to walk the three blocks to grab some tickets for tomorrow night and save the ticket fees by getting them on the Ticketmaster website.

12:15: I talk to the nurse across the hall, and the bad news is that the 9/10 match out of Portugal didn’t work out, however, there is a 10/10 match in the United States that has come available.  They are going to follow up with this and give me more info on my next follow up appointment.  My next PET/CT Scan is July 1, so my next follow up appointment will be July 2.

12:25: I walk out and head over to the Saenger.  I pick up 4 tickets for tomorrow night’s show, then walk back to the parking garage at Tulane where my car is parked.  I get in my car and head to my office.

1:00: I get to my office.  Not to my surprise, the A/C is not working, again!  The A/C can’t go 2 months without running into issues, it is constantly having issues it seems, and always too hot in the office.  My back office is 78 degrees, and when I open the door to my front office area, I get that distinct burning electrical smell, great.  Constant A/C issues is just one of the joys of having leased office space… BLAH.  Time to just work in the office in just my shorts, as its a sweatbox, but I need to get some work done!

6:00:  I get dressed and head out the office and back to a cool AC’d home…

6:15: I am out in the garden and find 4 cucumbers that are ready to be picked, so I snip them off their vine and bring them inside and weigh them and enter them into a spreadsheet I created to keep track of the Garden’s production for this year.

7:00:  Inside eating Tuna and Rice-A-Roni.

9:00: On the computer doing work.  Prepping a website for a client, and creating a test website for testing plugins and such before using them on a live client’s website.

05/22/2015:

Another lovely day.  Time for Cycle 3 of Chemo 3 Round 2.

8:50: Check-In

9:00: Sign Insurance Paperwork.

9:20: Lead to Infusion Center.  Temp 97.8, Weight 250  (I was 259 on Monday hmm…)

9:30: Sitting in the infusion chair waiting to be accessed.

9:55: Accessed, and blood return.

10:05: Premeds – Tylenol given.

10:10: Benadryl given and Cortisone Steroid given.  Oh Joy…

10:15: I can feel the Benadryl kicking in, Oh boy..,That loopy feeling.  Nice, LOL.

10:30: Blood drawn for tests.

10:55: Verified, I am who I am, Chemo hung.  I have some coughing throughout the Chemo, but not as bad as last time.  I am still coughing occasionally throughout the day.

11:40:  Done with the chemo, flushing.

11:55 Deaccessed.  All done…

1:30: I am hope, get my mini laptop ready and off to a clients location for an Internet Swap over.

1:45: I arrive on site. I check the Cox Install that was done while I was getting Chemo.  I hook up my laptop and give remote access to those managing the site to switchover the routers to the Cox Internet, make sure everyone is happy then away I go..

3:45: I am heading to another client to check on Printer issues.

4:00: I get to the second client.  Remove the printers, add the printers back, and then have no issues printing to the bypass tray.  Will check back with them next week.  Followed up on two other small issues while I was there as well.

5:00: I am done and head out and back home.

5:30: Out to eat with my parents and my Aunt and Uncle for my Aunt’s Birthday  I have Bread, Salad, Veal Panne with Fettuccine Alfredo, and, then some Cake.  Ahh Great Meal, but I can barely finish it all, but I do.

7:15: Back home and a little tired.

7:45: I go lay down and relax.  I’ll just watch TV, and work on a few things from the bed…

11:59: Dozing in and out on the computer and off, another day done…