Go Blue!

DustyMark's Journey, Uncategorized

Septembr 24th

I feel like the clouds parted a bit. We feel a few burdens lifted from us. The road is still very very long but when that blue line shows up on the map app…and you know which way to go…you feel a sense of relief.

We met with UofM on Thursday morning. This was a virtual call and we waited in the “waiting room” for 30 mins but she did come! I’m not going to lie, I was nervous the whole time. Did I check-in right? Did I check-in in time? Did I click the right button? Technology is not always reliable. For me anyways. I did not want to miss this meeting! We have waited 38 days since Mark was admitted to the hospital to talk to an oncologist! Its been a full month since we were told he has kidney cancer.

Dr. V said she thinks we can attack this with some new drug combinations that would work 2 fold. One is an oral agent that works to starve the tumor by stopping the blood flow to it/them. It will shrink and starve. It ALSO helps the second part (immunotherapy) to be able to work better. The oral part is taken daily. The immunotherapy would be administered every 6 weeks at U of M. The cancer cells wear like a “protective shield” and the immune system doesn’t recognize them and isn’t attacking them. The immunotherapy breaks down that shield and then the immune system can start attacking the alien (cancer) cells. She said she is “exceedingly hopeful” that he will be responsive to this. She even talked of him regaining some kidney function, which would we awesome! She said he could start the oral portion right away and the IV Immunotherapy the first week of October. All we had to do is contact her office and tell her if we wanted to do it. After that, our nephrologist came in (to dialysis). We hadn’t seen him since the first week at the hospital but he has been the MOST aggressive person in Mark’s treatment plan (regarding kidney) through this whole journey. He is very proactive. When he says he is going to get him a new script, but he has to look at his bedside notes…he does it as soon as he gets home. We talked to him about the meeting and he encouraged us to stay with the U of M doctor. That was it. We were sold. We called the Spectrum office the next day and cancelled all appointments, and before that I emailed the new doctor and told her we are on board and ready.

She is working on some new scripts for pain etc and the ultra-sound for his kidney is scheduled for Monday. We will have to drive a bit further to work with U of M but we think it is worth it.

Dialysis is getting easier. By that I mean, we are remembering the procedures better and the order of events. I feel like if I HAD to…I could administer his dialysis but I sure appreciate a week or two more to practice. It’s a big responsibility! When and if the cycler alarms…and I can’t troubleshoot, it feels like a big weight. You can’t let his blood sit in the lines too long. It has to be returned to his body. No pressure right?

Thank you for prayers. Thank you for yuor support and love.

We also had a super encouraging call from his boss. Mark was working for himself for a few years and we used Samaritans Ministries (highly recommend them for insurance) and then about a year ago went to work for a private company in Grand Rapids to fly their corporate jet with another pilot. The family that owns this business has been so kind and gracious to us and called up personally to make sure Mark has what he needs. I wish and hope everyone feels this loved by people on this earth. When I start to get frustrated and grouchy I have to remind myself!! We are very blessed people!!

There is your update. Cora came home via Amtrak (ran 50 mins late!) and there are extra kiddos in the house and it all feels and sounds great. I wish Mark could enjoy it more. He has started Season 1 of Survivor because 27 seasons of The Amazing Race is too much for him. Lets pray this new pain med (slow release over night) get pre approval SOON! I just helped him into bed and his isn’t feeling great.

I’m off to put a coat of paint on the upstairs vanity to finish up a few projects around here. Mark prayed for energy for me and I’m taking adantage of every bit I get. I figure if I stay up a bit later…and wear myself out a little more I will stop getting up at 3 am! Last night I took care of laundry and a few other things. I think I cleaned the trim on top of the wainscotting. :).