We're back

Once again, the weeks have slipped by and it is way past time for an update. I just read over my last post and realize how many things have changed in the last three weeks or so.  It feels like we are at a new stage again in this journey, and it always takes several weeks and a ton of energy (physical and emotional) to adjust to a new one. 

Ramsy finished the first of these chemo rounds this week.  Next one starts this Wednesday the 17th.  Thanks to all of you who pray for him to be able to manage all those pills.  It was not fun for him, but he did it with a little less difficulty than I expected.  Over these three weeks, he has become very weak and tired; he has lost all use of his right leg, except to take a short step with it while supported firmly on that side; because of the tiredness and lack of strength in that leg, he has not been able to get out of the wheelchair as much anymore, so he has lost strength in his good leg.  This all makes him very wobbly, and he really needs firm support pretty well all the time he is up.  In addition, he is sometimes dizzy.

He is not having headaches as often as he was a month ago, and he is mostly not "foggy" the way he was in June.  His language has not come back at all, so he is still limited to "yes" and "no".  "Yes" is harder and often comes out as, "No.  Ah!"  He still understands most of what is said to him, probably at least 80% judging by his quick responses to my jokes and comments, but sometimes when I ask him a question he just looks at me and I know he didn't get it, so I ask again.  That usually works.  Through questioning, I have found out from him that he hears the words that are spoken (as opposed to gibberish) but the meaning is missing for that moment.  

Another change is increased confusion over daily tasks.  He needs a lot more support for many things than he did a few weeks ago.  It is a challenge for him to choose between options offered to him- better to just offer one and wait for him to indicate "yes" or "no".  Sometimes he will start a task, such as brushing his teeth, and get "lost" in the middle.  I need to come alongside him and remind him what to do next.  This means that for both of us to get up and ready for the day takes up most of the morning; if you come to the door at 9 or 10 or 11 am, you may find me still in my pjs- but that's ok.  I have found myself able to relax about that since I remembered the mindset I had when our kids were newborns: the caretaking is not interrupting my morning "to do" list, it is my morning "to do" list.

Someone asked me recently, "So if he can't talk, and he has some trouble understanding, is he still 'there'?  Is he still himself?"  The answer is a definite yes.  He is very much himself: even-keeled, cheerful, loving, always ready to laugh at a good (or lousy) joke or at himself, patient, sometimes stubborn.  He rolls his eyes at things he is annoyed at, he teases me by acting silly or bratty.  When people meet up with him and say, "Hi, Ramsy," he is sometimes silent because he can't respond with "Hi", but he knows exactly what's going on around him most of the time.  Even though this stage is physically and emotionally demanding for me, I feel so lucky to have him with me every day.  It is so, so painful to think of him not getting better, and to see him struggle with tasks, and to not be able to have him tell me what he is thinking.  It is often difficult to write the hard things in this blog, because somehow writing them makes them seem more real, but it's important to me to let our friends know what's happening, and also to keep a record for our family. I cry most days.  But then, we also laugh every day, and enjoy eating chips together or watching a movie or seeing the hawks above the fields.  There is something good every single day, and I want to remember those things, too.