An Update as 2/23/13

e are celebrating this evening that Bob has now been seizure free four weeks! That is the longest stretch yet and we are encouraged that he is doing so well after his setback in January. We’re hoping to keep up this winning streak!

Life is more and more taking on the shape of normal life, but there are certainly plenty of differences. The biggest difference is Bob himself. In his heightened emotional state, he is easily moved to tears by touching things that happen, like the parade of yellow, green, and orange postcards that continue to arrive to let Bob know that people are still thinking of him. Bob feels very connected to all living things in our surroundings, especially to a bald eagle he has nicknamed Apollo who has been frequenting the neighborhood and sometimes perches in one of the oak trees in our yard to check in on Bob. Bob is very sweet and wants to do anything that he can to help me.

Bob has no real conception of the passage of time, so he has lost a sense of time-urgency that has too often characterized our lives. Bob eats more slowly than I do now, and doesn’t ever seem to be in a hurry. One of my pet peeves throughout our marriage has been when Bob gets intent on where he’s going and ends up walking several feet in front of me. Now I’m the one trying to squeeze too  many errands into too short a time, and sometimes I pull up short realizing that I’m walking ahead of him! At those times, I try to slow down and hold hands so that we walk at a compromise pace. But it reminds me once again to be careful what I get annoyed at other people about!

Without such a sense of urgency to be rushing out the door, Bob is now more likely to tell me ‘You look nice!” And I’m more likely to be the one too intent on trying to make sure I’ve remembered everything that I’m too distracted to stop to take it in.  

Coping with a poor memory has also brought changes to our lives. Bob has always been a voracious reader and one of my challenges in keeping the house in some semblance of order has been having to cope with the stacks of reading material near each of his favorite reading spots. Now that he can’t remember what he’s read, reading has lost much of its appeal. What Bob is enjoying in its place is listening to music. He has especially enjoying listening to music from the 70’s and 80’s. Our friend Jim sent Bob a CD of the Crash Test Dummies, who we had completely forgotten about! Now Bob has purchased newer CDs from some of his favorite artists to have new things to listen to. So stacks of books have been replaced by stacks of CDs and vinyl records.

Things that have stayed the same are that Bob is still the primary cook in our house. He not only enjoys it more, he is much better than me. We have enjoyed some very delicious concoctions lately. In contrast, the other day I attempted to make some homemade chicken soup in the crock pot. When I thought it was about ready I asked Bob to taste it and doctor it up if he thought it needed it. “A bucket of water!” was his assessment. He went to work to spice it up and it turned into something yummy after all. And then this newly romantic husband of mine wanted to dine on chicken soup by candlelight!  

Bob is also enjoying getting back to his writing. And he has especially enjoyed co-teaching in our Evocative Coaching classes with our fabulous faculty.

There are still things that come up unexpectedly from time to time that remind us that his brain is still healing. On Thursday, we went to the dentist for a teeth cleaning and that turned out to be a bigger deal than I anticipated. They had to do an extra deep cleaning because apparently having been in the coma allowed bacteria to get deep into his gums. All of the noise and rattling of his head during the cleaning left Bob pretty unsteady on his feet for the next 24 hours or so. Then yesterday, he had an MRI, which was also noisy. Today he has felt a little dizzy at intervals, but is feeling better now.   

Thank you for your continued caring, and interest in Bob’s healing, and for the prayers that have sustained his healing. 

-Megan

An Update as of 2/14/13

You never know where your angels might find you. Tonight Bob and I popped into a little local Mexican restaurant for dinner on our way home from my office. When we walked in, a woman who neither of us recognized immediately began exclaiming how glad she was to see Bob and how amazing it was to see him looking so well. Bob apologized for not recognizing her and asked who she was. It turned out it was Jenny, who works in our accountant’s office, and her husband Mark. Jenny told Bob how much she and everyone in the office had been praying for him and following his progress on the blog. After chatting for a few moments, we went on to our table and ordered our dinners. At the end of our meal, when the server came to our table, she flipped through her order pad, and finding the right page she tore in out, saying “Your meal has been taken care of, and your friends left you this note. It said “Happy Valentine’s Day Bob and Megan!  God Bless, Jenny and Mark.” Both of us dissolved in tears at that unexpected act of kindness, and even more so at the thought of how many people outside of our awareness have been keeping us, and especially Bob, in their prayers.

We are especially in need of those prayers over the next few days. Today Bob took his last dose of the steroids he has been on to suppress his immune system since his recent setback. One of the ongoing puzzles in treating Bob’s illness has been to know how much immune suppression to give him and for how long. He will now be back on just the three anti-seizure drugs and Cellcept to suppress his immune system. We are fervently hoping that that is enough to keep his immune system calm and out of attack-mode, praying hard that we keep the seizures at bay.

In the meantime, inch by inch, life is slowly taking on the shape of normalcy. We are both learning a new, deeper variety of patience than we’ve ever known before because everything seems to take so much longer to get done. But little by little, things are getting done and checked off the to-do lists. Bob figured out how to fix the toilets, and we hired someone to come sort out the most pressing of the technology problems. Bob is back into problem-solving mode, using the Internet to help his figure out how to do things when he forgets how.  He is also faithfully documenting his days in his journal so that at the end of the day he can review what has happened and try to conjure up memories of those people and events. With the Dean Search over, I am trying to catch up on all of the other important things that got set aside in my work and also finding more time to meet with my students, which I enjoy.

Thank you for being among those angels who have kept surrounded us with love and care these past months. 

-Megan

An Update as 2/7/13

I just wanted to share the good news with you that the combination of prayers and medications has paid off and beginning yesterday (Wednesday) Bob has started doing much better again. He started saying that he noticed that he felt his thinking was clearer. His orientation in space is better again, and his memory, while still a challenge, is more like it was a few weeks ago than it has been in the past two weeks.

With this new found clarity, Bob has gotten back to work on various projects. Just this evening I think we may have finally escaped from technology hell, with no less than three hours of help from a technology professional. Email is now working on Bob’s laptop and desktop. What a relief! Now onto other projects, like reassembling those toilets! (No, we didn’t call a plumber -- yet.)

We said a grateful farewell to Bob’s dad yesterday morning as he finally got to fulfill his long-time wish to be a Snow Bird, visiting his brother Jim, his sole remaining sibling, out of ten, in Florida. 

-Megan

An Update as of 2/3/13

We are at an ambiguous moment in Bob’s healing process, with both good and bad news. On the one hand, there are times when Bob’s memory is as bad as it has been at its worst.

Yesterday, Bob was getting ready to make our morning tea, which he does most every morning, and opening a cupboard he said “it looks like we’re out of tea.”  I had to remind him that we keep the tea in canisters on the counter (the same place they’ve been for a decade).

Then his dad asked him for a measuring cup and he started opening drawers looking for one. When I reminded him that they were in the cupboard, he opened three cupboards before finding the right one, even though he uses those same measuring cups almost every morning when he makes his fruit smoothie.

And this evening when we stepped away from the table in the middle of our dinner to watch the Super Bowl halftime show, when he returned he’d forgotten where he had been sitting (in his regular seat) and sat down at his Dad’s place instead.

My heart breaks a little at each of these moments.

On the other hand, sometimes he has a flash of insight and remembers something completely unexpected. On Friday, Bob and his Dad got into the middle of a plumbing project trying to install a fix to one of our toilets, when an essential screw fell into a tight and unreachable spot. They thought they were sunk, when suddenly Bob remembered a tool he had that was just exactly what was needed to retrieve the screw. He went out to his tool bench and knew exactly where to find it. He was back in a moment and he saved the day!  

Unfortunately, today the plumbing project took a turn for the worse, and with two of our three toilets out of service, we will be calling in a real plumber in the morning!

Bob’s spirits are good and he is feeling very upbeat and optimistic. That may be the steroids interacting with his naturally positive personality, but his internal experience is of feeling more normal than he has been and that his thinking feels clearer.  He is trying to get back to some of his work and his normal activities, but things takes him a long time because he still loses his way.

I’m feeling a little off balance because I don’t have any clear markers to know if things are heading in the right direction again in the wake of this recent setback or whether things are plateauing or getting worse. I guess this is just a time of watchful waiting, as we see how things play out with the tapering of the steroids and whether or not his immune system is sufficiently calmed down. The good news is that we are not seeing any outward signs of seizure activity, so the memory problems may just be from his brain having gotten more inflamed a couple of weeks ago and it will take some time to recover.  

I remain grateful for your continued prayers and love. 

-Megan