Late Weekly Monday Update 10/29

I'm soooo sorry!!! I've been so behind on blogging that I didn't even get in my Monday Weekly News Update! Probably shows how sick I've been when I'm not as eager to blog and update. It's definitely been a really hard week physically. I've tried to explain it to a few people but it's an overall horrible feeling I just can't wrap my head around. 

The last 24 hours I've definitely gotten some energy back. About an hour or so here and there. Which I'll take!! This morning I helped get kids off to schoo, made a couple of egg m muffins and then went back to bed. It probably helps that I slept amazingly after a couple of rough nights!

So my weekly update! We are waiting at NorthSide Holly Springs to get an ultrasound of the bladder and kidneys. My urine culture is negative for infection so the fact I'm peeing kool-aid with zero pain has everyone scratching their heads. They think it's a side effect of cytoxin and we will try a drug next time I get it to protect the bladder if all this shows everyththing is fine. 

I might try to see if I can get her to hover over my liver for a minute. So freaking curious!!! Everyone is. PET scan will be done after the fourth cycle of AC to check disease progression. I'm hoping they look and go what!!?? It's not there!! I know my stomach feels SO much better than when this started, I also know I'm still on the intestinal blockage diet 75% of the time. 

Second IT chemo is Friday. For whatever reason I was uber anxious going into number four. I was uber sick feeling and just didn't want to. That's been really the last week. But like I said, the last 24 hours funk fled and joy settled.

I posted a video of Valerie Harper who has survived leptomeningeal carcinomatosis for two years now. Her interview is powerful and I'm not sure if it was just knowing some one was out there or if I really just did snap out of this nasty sick feeling but I felt an energy I had not felt in a long time. 

I also got a phone call from Dr Booser at MD Anderson and we chatted for a while. Im no less alone in this. He hasn't had a case personally in a very very long time. He said some of his colleagues have. They don't always use Topotecan but the side effects should be minimal. He seemed like it would stop progression. There was no negative thinking there which made me positive. He also said he really liked Dr May and felt I was in good hands here. That's pretty huge. He gave me his personal email and to keep him posted. I feel humbled and thankful for this team God gave us. All along he's cherry picked the best for us. He's always picking the best for us… Even you. 

Today's bible verse was:

God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them. We want each of you to show this same diligence to the very end, so that what you hope for may be fully realized. (Hebrews 6:10-11 NIV)

I can't stop thinking about all the people praying for us. Through this you have shown so much diligence. More faith than I can even comprehend. Thank you for lifting me and my family so often and helping us realize our hope. Lifting us out of dark places and physically painful moments. Thank you for praying for our doctors and nurses. For our finances. So many of you have supported us non stop giving us time to just be a family.