Aphasia and Itching

I wish I could thank each of you individually for reading my last post.

Writing out my feelings is a kind of a therapy for me. I walk around with these ideas burning in my mind, but when I write them out I feel somewhat relieved of the sentiments and better able to move on to normal living.

I also feel like when I write, its as though everyone reading takes a little part of the sorrow and the burden and it somehow becomes lighter.

It is also helpful to know that what we are experiencing, learning, and suffering has helped people. Otherwise our suffering often seems so pointless, but as we share it and see others learn and grow it helps us find some immediate meaning in the process.

And so again, I say thank you for reading. It helps more than you know.

Now I wanted to talk about my dear Jacob.

He has been struggling lately.

Ever since the scan last week his spirits have been depressed and the weight of this news is heavy on him.

Facing your mortality is a terrible trial. And it seems to crop up for him again and again and again.

He is also struggling with some immediate issues that are very difficult.

He suffers from aphasia, which is a speech disorder caused by damage or swelling in the left hemisphere of the brain. All of Jacob's tumor growth and swelling has been in his left hemisphere where language is controlled.

Aphasia means that it is hard for him to speak, and he suffers most in having difficulty producing language. From the American SLH Association's website he has experienced these symptoms:

--Experiences difficulty coming up with the words he wants to say

--Substitutes the intended word with another word that may be related in meaning to the target (e.g., "chicken" for "fish") or unrelated (e.g., "radio" for "ball")

--Has difficulty putting words together to form sentences

Aphasia does not affect his intelligence. Jacob is incredibly bright and perceptive and his mind functions at a high capacity, so you can imagine the difficulty he has experienced the last weeks every time he opens his mouth to speak and cannot fully communicate the thoughts in his head.

It has been a great trial.

His aphasia seems to be progressive aphasia, where he has experienced decline over a short period of time, especially during the last month.

We were reading about how Ralph Waldo Emerson, a great writer and wordsmith, experienced aphasia at the end of his life and it turned him into a recluse because it was so difficult to be around other people, unable to communicate the things he wanted to say.

I know Jacob deals with aphasia daily, as we attend church, school functions, meet with friends and family, interacts with clerks and takes phone calls, and as he teaches his Sunday school class.

It would be so easy for him to withdraw.

But he does not. He continues to put himself out there, to be with people, to try. I admire him so much for continuing to engage even when it is hard.

His other immediate difficulty is internal itching. Horrible itching, all over his body, that comes on in the evening and persists for several hours.

His doctors seem to think it is an allergic reaction to the chemo he has been taking for almost two years. It affects your nervous system and neuro endings are embedded in skin and so he itches.

There are no creams, no lotions, no ointments, or medications that seem to help.

It has also been progressively getting worse for the last 6 weeks or so and has been very hard.

Jacob does not complain. Most people will be surprised to learn about these struggles. He endures, and endures, and endures but is feeling defeated.

We hope that this next surgery can alleviate these problems. That the swelling will go down and that his aphasia will lessen. That he can take a break from chemo and that his nervous system will improve.

But I know he would appreciate your prayers.

Sometimes I think he wonders how much longer he can endure.

As we came home last week after the scan and talked to the kids, we told them about the surgery but explained that Dad had been through so many surgeries and at some point could choose to say no to any of these procedures that put his body, mind, and spirit through so much strain.

Lauren and Ellie both processed that information and their eyes filled with tears at the prospect of their Dad not doing something if there was something he could do to fight this disease. Their reactions roused Jacob's spirits to continue to do whatever he could for the benefit of his children. 

Each day he has with them is a gift and I am grateful for all that he suffers to ensure that there are still days to come.