Road Trip

It has been a very long day, starting at 5:30 a.m. to prepare to leave for Columbia. I long for the days of being able to jump up and get ready and run. Everything we do takes literally forever; we are getting a routine though, and it seems that things are running a little more efficiently. Brian literally is unable to put weight on his legs, so taking him up and down the steps in the house and out the front is out of the question. I can't even tell you how much I wish our house had sold because it is becoming a burden for Brian's quality of life and ours as a family. We have moved to using the wheelchair and going out on the deck, down a few steps, then down through the yard. We are borrowing a scooter later this week, which will help with this, as long as it isn't wet in the yard. Once that happens, Brian may have to stay downstairs. But for now, this is working! TJ is helping build a ramp off of our deck so maybe I might be able to get him in and out of the house without having to schedule people to come help me. I hate this disease and what it has done to us.

Ok, enough of that.

We saw Dr. Litofsky (neurosurgical oncologist) today, and he gave us the confirmation on the good news from the surgery a few weeks ago...no evidence of melanoma. The pathology report showed no traces, and he recommends no further treatment for the brain at this time. It was another sigh of relief! Now we can just concentrate on the body, which we are doing with the anti-CTLA drug in Chicago. Later in the week, I will check the status of this treatment being ready in Columbia for the Nov. 16 infusion.

It was hard to do much celebrating because Brian was at a pain level of 7-8...this after a 6 a.m. dose of short acting pain meds, an 8 a.m. dose of long acting, and 10:30 a.m. dose of short acting at an 11:15 appointment...obviously not working. We again made some adjustments, and hopefully that will help. I don't know what we will do to get this under control if these changes don't work. Brian continues to sleep often throughout the day, and when he is awake, a lot of times he's not completely with it. There are several moments of the day when he seems himself, and that is great to see. He and I are both struggling with being very frustrated with this disease and how it is affecting him physically. We've been snippy with each other, which in itself is upsetting. Maybe that is why I knew it was past time to stay home with Brian for a while. I am hoping to work a day or so each week for my own sanity and to keep things running smoothly at school.

The girls ventured out with their dad tonight to trick-or-treat around town. I was planning to take Tye also, but I was just too worn out. I think we'll all enjoy tomorrow night better since Tye and I won't be worn out from tonight. It will be our first year that Brian hasn't come along for the ride...even the past two years when Octobers were so bad, he was up for a van ride to see the kids. I think that is out, but he is planning to come to my dad's to see Tori, Don, and Zeke, and Rachel, Amberlea, and Tye all together.

My dad has had a rough few weeks, as my grandma has been sick off and on. She lives at the Autumn House, but just is showing signs of not being able to care for herself anymore. She has been in the hospital twice since Sept. and they diagnosed her with Meniere's disease. She fell yesterday along with other symptoms, and things moved right along today to get her into the nursing home. It is a hard decision, yet obviously the right one. It is still difficult to see her like this. I think it will be so much better with them regulating her blood sugar, her diet, and her medications, along with the everyday tasks that she needs help with. We plan to take the kids down tomorrow night to see her in their costumes.

Thanks for your continued prayers, as always. Know that we pray for you too.
Jenni