The good news from the Duke trip is that the tumor has not grown again. If I would have posted this that day, it would be a very positive and excited post. That day we were so excited that he is alive and so excited that he has hope for a miracle. But we are back to the day to day life of brain cancer, and not feeling so positive. As we got home and started talking, I kept reminding him “We are celebrating because you are ALIVE, and as long as you are alive, there is hope for a miraculous turnaround.” It is hard for him to celebrate news of the tumor not growing, because realistically even a small GBM tumor – is still a terminal GBM tumor that is threatening his life. He absolutely needs a miracle. Even if the tumor were to stay the same, (which statistically speaking, they don’t do for long) this quality of life that he has right now is bad. At Duke it was mentioned that a lot of times the symptoms of someone with brain cancer are the same as Alzheimers or Dementia. Today he starts on an Alzheimers medication to combat his dementia.
“Dementia is a general term for a decline in mental ability severe enough to interfere with daily life.
While symptoms of dementia can vary greatly, at least two of the following core mental functions must be significantly impaired to be considered dementia:
- Communication and language
- Ability to focus and pay attention
- Reasoning and judgment
- Visual perception”
When I read the above info, I cried. He has all of those. He can’t take care of himself. Just some examples are – Its impossible for his brain to figure out all the pieces of clothing that he needs to get dressed, so I have to get them. Even if they are laying out on the bed, he has a hard time figuring out what order to put them on in. If he wants a drink, it is quite the task for him to figure out that he needs a cup and a beverage, then to try to figure out where to find each of them (fridge and cupboard) is a task, and there have been days that he stares at a milk jug and a cup and can’t comprehend how the milk can get into the cup. (Its basic troubleshooting that we take for granted…we know that if we want milk in a cup from a jug, that we need to pour it – but his brain doesn’t work that way sometimes.) I’m so hesitant to share details, but I also think those details are helpful for friends to understand him a little better. They said I might see a difference with the medication in about a month.
He really struggles in conversations. He will ask questions that don’t make much sense, but he is really just wanting to show that he cares about the details of your life, so give him some grace and patience, and don’t be afraid to guess about what he is trying to ask and talk about yourself. He wants to hear about your life.
His fatigue level is crazy and unpredictable. He went to bed around 8:30 Thursday night and I woke him up just long enough to take medicine in bed in the morning, eat some lunch in bed around noon, and then got him out of bed on Friday evening for dinner. He was up for the evening and went back to sleep.
So we are thankful that the tumor hasn’t grown in the past 8 weeks…but that’s not enough. We need a miracle. And not just for the tumor to go away, but for his brain to be restored. The tumor, chemo and radiation have caused so much damage to his brain. When I named this blog “Healing and Restoration,” I couldn’t have even imagined how big those two words would become to me. This blog was named when we knew he had a tumor, but we really thought it was going to be a month long process of having it removed and recovering, and then moving on with his job and life as normal.
We move forward, continuing Etoposide (chemo) on two week cycles, Temodar (chemo) every single day with no break until the next Duke visit, and Avastin infusions once every two weeks. This was the plan before the last Duke visit also, but the chemo did start to lower his Platelets so they had to hold the chemo for the week before the visit. His platelets are good this week, but his white blood cells are low. So I don’t know if his body will hold up on this regiment of chemo.
So thats where we are.