September 9th.
We were up until 10pm at the Gonda Building getting Mark’s MRI completed. I watched people go in and come out but Mark’s seeem to take forever and we were the second to the last people to leave. We walked back in the dark. I don’t even remember what we talked about.
Mark slept better last night but was up about 3. It was much better than the previous 7 nights or so. We met with Onocology this morning and went over a few things. I’m trying to not be negative here but I had really high expectations coming over here hoping they would see something different. Or maybe they were see something new. Or see the same thing but have a different opinion. He told us that Mark’s cancer was rare (but I guess that is obvious since we have no pathology reports so far). He told us that because his kidney isn’t functioning and since he is on dialysis that he could not recieve strong chemotherapy. He told us that he could start on an immunotherapy drug and that can be administered at home (Grand Rapids..not our house). We learned that the biopsy was sent out on the 4th. This is all new to me and I’m confused. We were told the kidney biopsy was sent out on the 24th and that we would hear something in 5-7 days. It’s been over 2 weeks. I guess they also sent the lymph node biopsy out as well. I’m very confused. Perhaps they didn’t have enough kidney biopsy to send out? I just wish they would communicate with us what was happening. I like to have answers. I don’t like to be kept in the dark and it doesn’t really make sense to me. The concesus is that no one can really give us answers until that pathology report comes back. Mayo is looking at it too now but there really isn’t much more we can do. One additional thing that we were told is that when looking at the MRI, small (less than 1cm) spots were seen on the liver.
I’m a bit dissapointed. Mayo told us a tumor thrombus was high priority and that they would schedule an MRI. He had that MRI and the tumor thrombus was never discussed.
Aly and Hatcher ran in a conference meet today and we stayed tune via text while Mark was in dialysis. He is scheduled for dialysis again tomorrow morning and then we can go home. I guess we call Dr Campbell on Monday and get in for immunotherapy while we wait for pathology. And even when it does come in…I’m not sure what they will do regarding treatment. Less chemotherapy? A pet scan? I don’t know how Mark feels totally but I feel like we are still walking on an unclear path, waiting at the mercy of some doctors that may or may not communicate well with us.
We cancelled our Monday trip to Cancer Treatment Center of America in Zion, IL, because without pathology reports…we could come back empty handed again. So we wait. Maybe after we are trained for in-home dialysis we can go for an evaluation if Mark wants.
This is how I feel but you can ask Mark if he feels different.
So we will go home and I will keep up his pill regiment, make him smoothies, force him to drink “dirt tea” and give him back rubs and all the other natropath things I know to do while I walk along side him in this very unexpected and unknown journey.
On a lighter note…we walked into the more downtown area after dialysis. It was just up the block. They were having their last Dowtown Nights (or whatever it was called) of the season. Vendors and resturants all had tents popped up and goods out to buy. There was live music and lots of people. This is where the original “downtown” was and it had cute old buildings. I guess I didn’t venture out far enough or I would have checked it out sooner. We did one pass thru, had a bite to eat (yes, that makes 3 meals for him today. Small…but still) and headed back to the hotel.
The journey wasn’t pointless and we are not hopeless. I’m just frustrated.