U of M, Sleep and Meets

DustyMark's Journey, Uncategorized

September 18th

We decided to get more nutrients in him, it had to be juicing because solid foods were causing him pain. I decided I would juice with him. Man, thats hard! I have always wanted to do a juice fast just for funzies. Now is my chance, I have a bigger reason and a push to do it but its hard. The first day I ate two cookies. Um, no Dusty, that is not juicing. It’s only been a few days and we have adjusted it to a protein shake as well (shakeology because it has phytonutrients, anti-oxidants, digestive enzymes, no added sugar and it has some mushrooms) and any solid organic “cancer fighting” berry or fruit he wants, but he usually only eats like 2. I also stopped drinking coffee on accident. We aren’t getting up in time to make it so I have been skipping it and whoa, by 11 or so I feel like I could fall over and sleep. I have quit coffee many times…on purpose…and not felt like I needed it. But this time I do. So maybe an afternoon cup here and there will be fine. Is that the juice of a coffee bean?

So many of you have been praying for Mark and specifically rest. I contacted his PCP Thursday night before I went to bed (mychart) and urged her to be an advocate for Mark. I told her I needed her to help us figure things out. I needed help with pain, with his gut, with sleep etc and I told her I didn’t think I should have to contact some gal in Germany to get into a specialist. I asked her to call me. She did. We talked yesterday and she has put in urgent requests for the gut doctor (gastro something) and for a pet scan. (which looks at active cancer in the body) We talked about being proactive with a port for immunotherapy and possibly chemotherapy but since he already has a port in…we can’t do that but at least the subject was broached so that we are ready when it comes. She told me to double his pain meds at night. So we did. He had the BEST sleep he has had in weeks which makes a huge difference!! Thank you for praying!!

This morning he felt good enough to go to the meet. It was 5 minutes down the road and Ted Smith from Sparta (it was a Sparta meet) worked it out so we could pull into the bus drop off and right up to the course. Mark was able to watch the meet from a golf cart and see both of our kids run today. Derek Max came up and touched Mark’s shoulder but Mark couldn’t tell who it was and so he was just being kind and saying “how are you” etc and then Derek rubbed his shoulder again and then Mark realized who it was (he was behind him a bit) and just started laughing. It was good to hear him laugh. Derek is good for that.

Keep reading at the bottom (I WILL figure this out!!)

me and the wild man

Mark and Hatcher. He PRed again today!
Aly got second today

So my head has been spinning with what I can do to help Mark while we wait and it is overwhelming, really. I just want very distinct guidance from someone who is an expert with kidney cancer in patients with one kidney on dialysis. Someone with a holistic approach along side traditional/medical approach. I’m not sure it exists. We meet with a renal cell expert at U of M on Thursday. Pray that this is the answer or the next step to an answer so we don’t have to start back at square one.

We started real training at the dialysis center. I can’t believe what we will be incharge of. I can’t believe I am using syringes to pull blood out of my husbands chest! We set up the machine, we program it, I do the dressing and catheter set up and hook him up. Push the kidney button and hope no alarms go off. We have alot of training do do yet but the hardest part is remembering to take vitals every 30 mins. As I was typing this I realized Mark is very trusting…I don’t know if I would want him to do it to me 🙂

Thank you to the food fairies this week. The sock folding fairy, the pool closing fairies, and whatever fairy got my electric connected to my house 3 weeks early!!

Gotta run to the pharmacy!