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

06:30:  Up I am.

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

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

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

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

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

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

08:20:  Michael brings us to the back.

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

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

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

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

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

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

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

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

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

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

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

12:45:  My drug is started.

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

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

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

13:55:  My flush is done.

14:00:  Deaccesed I am.

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

14:15:  Bathroom break.

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

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

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

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

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

16:18:  We arrive at the airport.

16:30:  Through security we are.

16:35:  Across the skway.

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

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

21:20: Boarding begins.

21:37:  Pushback

21:55: Takeoff

22:39: Touchdown

© Craig