And tears of sorrow…
I’m back up in “my” infusion chair at 5 North after meeting with both Dr. Pishvaian and Christina Urso. While the meeting was better than could be imagined I haven’t felt this emotional over of my cancer in a very long time. As I get ready to write this post the reason sounds silly and yet it is none the less very real. Our meeting was about my not needing to come back after the next treatment. No one is still sure what the protocol is supposed to be for the follow-up CT Scans which will be used to make sure the cancer hasn’t returned, because no one on this study at Georgetown has had the kind of response I’ve had nor gotten this far in their treatments.
I asked if I’ll need to stay on the blood thinner Xarelto and Dr. P commented that once cancer has metastasized they recommend the patient stay on a blood thinner for the rest of their life. I then asked but what do you do when the patient is NED’s – and can I use that term?
Christina and I both looked at him expectantly.
“Yes we can use the term NED (No Evidence of Disease), but I don’t have patients that I can normally say that about”, replied Dr. Pishvaian and then almost as if he were talking to himself continued, “Well I guess if you had been on chemo and then had surgery that had removed the cancer I guess you wouldn’t need to remain on a blood thinner. I’ll have to ask Dr. xxxx… about it – I’m not sure.”
“I don’t have patients that get to that stage….” I felt so sorry for him, that he doesn’t normally have patients who are ever cancer free. That he has to ask another oncologist what to do with me. I felt sad for him as he was saying this, yet he’s giddy because he rarely has this conversation.
I then mentioned that I’ll still need to come by and have my mediport flushed once a month to which he replied, “Why? We’ll just remove it.”
“Well shouldn’t I keep it in at least until after the first few scans?”
“No, it’s a possible point for infection besides we can always put it back in if we need it again.”
Then what else is there for me? Just the CT Scans, and what do I do with every other Monday? As I made my way back upstairs I found myself getting every emotional as I processed these questions.
One more treatment to go after today and I’m a free man.
[blockquote align=”center” variation=”mossgreen”]Dr. Pishvaian shared how he recently saw a graph used at a cancer symposium by MedImmune. One of the lines on the chart did a quick decline and then stayed steady at the bottom of the graph. The doc chuckled when he saw it knowing that line represented me. I’ve become the anecdotal story for the positive effects of MEDI4736.[/blockquote]
(Added at 3:00PM) I caught Dr. Ion Cotarla upstairs and cornered him while he was at a computer. He’d heard from Dr. P. asking about the protocol so looked it up for me. It even took him a little bit to find the spread sheet showing what the protocol expects after the treatment. I get to have another CT Scan (a little sooner than expected) then I go back in at 1 month and again at month 3 for blood work. CT Scans every 2 months for the rest of the year. After that I may only be under the care of Dr. P and he said he’d want to do a scan every 3 months.