An Update as of 2/16/16

I just wanted you all to know that Bob is doing amazing well.  He has a little row of staples on both sides of his head, that he does not even keep covered.  But he is not in pain or taking any pain meds.  He is pretty much just back to his regular routine.  It is astonishing that someone could take both sides off his skull, drop in 124 electrodes, leave them in for over a week, then take them out, sew things back together, and after two or three days of discomfort Bob could basically be back about his business!  The human body is an amazing thing and the medical profession is amazing as well!

Thanks for sharing in this adventure with us.  The concept of it has been much more frightening than the reality of living through it.  Hopefully, this will give us more courage for the next steps, whatever they turn out to be.

All the best,

Megan

An Update as of 2/14/16

Wonderful Valentine's Day news! Bob and I are at home and resting peacefully in bed. We're so pleased with how well the testing went and that we were able to come home late yesterday afternoon. Thank you to all of you for your continued prayers and support. We certainly felt them.

-Megan

An Update as of 2/11/16

Great news! Bob has been experiencing multiple seizures a day since I last posted. His team of doctors have collected enough data to examine. The plan, as of this evening, is for Bob to have surgery tomorrow afternoon to remove the wires from his brain and for us to return home sometime on Saturday.

From our most recent conversations with Bob's team, it has been recommended that he have a resection of part of his hippocampus to remove the area where most of his seizures are happening. This area is badly damaged as is, so he won't be loosing much more functioning in that area than he already has. We're also still considering having the neuropace implemented, but we have time to discuss this as a family, and with Bob, before that decision is made. We have been informed that Bob will never again be completely seizure-free. The goal, at this point, is to lessen the amount of seizure activity.

We ask that you pray prayers of gratitude to our friends Bob and Alice who so graciously gave of their time this week. I have been held up by their kindness and generosity and am incredibly grateful for the breaks they provided me with throughout the day. Please also pray that Bob rests well this evening and sleeps soundly as this has been when he has been most anxious and confused. I am staying with him this evening to hopefully help ease his anxiety. In the morning, our friends Jim and Kathy will be here to spend the day with us, which is another blessing. As always, please send prayers of appreciation and love to the dedicated staff at UVA who have worked tirelessly this week to provide Bob with wonderful care.

-Megan

An Update as of 2/8/16

Bob had yet another day of ups and downs. He called and woke me very early this morning urging me to come to the hospital immediately. I checked in with the nursing staff who informed me he was doing well and wasn't going to be having surgery today. I did a little yoga, had breakfast and arrived at the hospital at 9:08. I know the specific time, because Bob reminded me of this throughout the day. I found Bob in a very agitated and anxious state. He was very rude and obstinate with one of his physicians, which as we all know, is not his normal demeanor or behavior. The doctor was incredibly kind with Bob and took everything in stride. I believe that Bob's anxiety and confused behavior are related to the murky life of living day to day in a hospital setting where the hours and minutes all get blurred for even the best of us. It also doesn't help that his brain is in a weird state due to the testing and that his medication levels are different from normal.

I was able to calm him down, and within an hour or so, he was remorseful for his early behavior towards his physician. He was embarrassed by the way he had acted and was desperate for her to return so he could apologize. Luckily she came around again for rounds and he was able to do exactly that.

Our friends stayed with Bob for a large chunk of the afternoon, which gave me the chance to head to Trader Joe's, pick up a new book at the bookstore and take a quick nap. They were so gracious to stay for so long and to provide me with some much needed down time. I am so grateful to them. They plan on being around through Wednesday, but have offered to stay until Friday, should I need them.

While speaking with Bob's team of physicians today, I learned a few things about his testing: The original 5 seizures he had early-on are most likely a result of the implementation of the testing equipment that was placed in his brain originally. Thus, these don't really count towards the data we need to determine when and where his typical seizures are happening. I was also informed that he did have a seizure yesterday, which is good to hear! Bob had me write him a note on the white board in his room to remind him that, Yes!, the doctors and nurses really do want him to have a seizure. In typical Bob fashion, he jokingly reminded everyone who entered his room today that, "Can you believe it!? These people actually want me to have a seizure! And more than one!" His doctors also informed me that they would once again be lowering the dosage of one or more of his anti-seizure medications tomorrow to hopefully trigger those pesky seizures.

Please continue to pray that Bob has seizures and they get recorded clearly. Please also pray for calm and peace for Bob, especially at night and in the early mornings when he is most anxious and restless. As always, prayers of gratitude towards the staff at UVA are always wonderful as we are so blessed with such gracious, caring people who are truly invested in Bob's care.

-Megan

An Update as of 2/7/16

Today was at times a frustrating and at other times peaceful day. When I arrived this morning, I was able to speak with Bob's physicians and learned that he did not experience any seizures last night. As of that point in time, he had not had a seizure in two days. The decision was made to reduce another of his anti-seizure medication dosages to see if this would trigger more seizure activity. We were told that if he didn't have anymore seizures today or tonight, they probably wouldn't be taking the electrodes out on Monday.

Bob's memory was very poor today and he struggled greatly with anxiety. When he would awaken from a nap, he was frequently confused and scared. When I first walked in his room this morning, the nursing staff was cleaning up spilled tea and having Bob put on mitts to keep himself from attempting to tear out his IV. Bob was happy to wear the mitts, as he said his scalp was itching and this prevented him from scratching himself. We spent the morning listening to the church services from our home church on his iPad and this brought us both some peaceful rest. 

Due to his poor memory, Bob has had a great deal of difficulty remembering to manage his own pain medication. His nursing staff has been wonderful about coaching him through this process, but we made the executive decision to take the pain medication out of his hands so to speak. A more consistent level of pain control was helpful to him this afternoon and we were able to play cards and converse with one another. There were glimmers of the Bob we know and love throughout the day as he attempted to make the doctors and nurses laugh. This was heartening to me.

I left for a quick lunch late in the afternoon and arrived back at the hospital to find out that Bob had ripped the IV and pain pump out of his arm to take himself to the bathroom. It was a bit of an ordeal to get everything hooked back up, but we are so blessed to be working with such caring and compassionate nursing staff who understand Bob's confusion. After getting him all hooked back up, we were able to spend the evening watching the Super Bowl together.

When I left this evening, Bob had not had any seizures yet. He made many attempts to stall me from leaving as his anxiety was ratcheting up. I reassured him that he was going to be well cared for at UVA and that the doctors and nursing staff were hoping he would have a few seizures so they could obtain better data on his seizure activity. A nurses aid was going to be staying in his room with him overnight to reassure him when he wakes up in the middle of the night, as this appears to be when he is most anxious and confused. 

I am so grateful to our dear friends Bob and Alice who will be coming up tomorrow to sit with Bob and give me a chance to get a break. They have offered to stay for three days and I have decided we will take it a day at a time to determine if we need them to stay for that long. Today's events made it very clear to me that someone who knows Bob well needs to be with him at all times when he's awake. 

Please pray that Bob has some seizures this evening and tomorrow. Please also pray that the increase in pain medication helps reduce the static the technicians were noticing in his data (it is alleged that Bob's pain levels were high due to his inability to control the pain medication and that this was causing "static" in the data they were collecting). Please also continue to say prayers of gratitude for the incredibly compassionate and caring staff at UVA. Especially after our experience this past summer in Buffalo, we are even more keenly aware as to how wonderful it is to be surrounded by kind, competent staff who are true professionals. Thank you again for all of your continued prayers and kind words. I am hopeful tomorrow will be a better day.

-Megan

An Update as of 2/6/16

Early today, Bob's epilepsy doctor informed us that they plan to remove the leads in Bob's brain on Monday, should they obtain data on a few more seizures this weekend. He will then stay overnight for monitoring. They wanted him to have a few seizures today, but this did not happen. They reduced his Keppra dosage this afternoon and we were encouraged to play loud music and have Bob drink some caffeine to trigger seizure activity. Tomorrow, if Bob does not have any seizures tonight, they plan to reduce his Lamictal dosage. 

At the beginning of the day, Bob wasn't controlling his pain medication well and was understandably feeling depressed and grumpy. After some coaching from his nurses, he was able to get his pain under control and we had an enjoyable afternoon together. He enjoyed having mashed potatoes with tomato soup for gravy, per his request, for lunch. This was a childhood favorite of his and was a treat for him since he's been having some difficulty chewing. 

I was able to leave for a few hours this evening to enjoy a casual party with some of my colleagues here at UVA. This was a nice reprieve from hospital life. Upon returning to the hospital, Bob was back to feeling irritated and was a bit daffy. I reassured him that the doctors and nurses want him to have seizures while he is staying at the hospital so they can obtain data on how best to move forward from here. I left him as he was drowsing off to sleep. I am hopeful that this return to a more agitated and confused state was a sign that he had an impending seizure.

The current course of action for Bob is for the team at UVA to continue to map out where his seizures are taking place so they can determine an appropriate course of action. As of today, they had mapped out 5 seizures, two on one side of his brain and three on the other. Because the seizures are happening on both sides of his brain, this rules him out of the surgery that would remove pieces of the brain where the seizures are initiated. He is still potentially in the running for having a neruo-pace implanted later this year-- the neuro-pace implementation would work to stop the seizures before they happen, similar to a heart pacemaker. This can only be done if his seizures are beginning in only two or less locations within his brain. Thus, his team needs a little more time to determine if his are only originating in the two locations they have already identified, or if there are other locations within his brain that are impacted.

Please pray that Bob has a seizure this evening and a few tomorrow. This will provide his team at UVA with more concise data to make better decisions about his continued care. Please also pray that his seizures are only happening in two locations within his brain so that he can remain a candidate for the neuro-pace. We ask that you also say prayers of gratitude for the team of doctors, nurses, therapists, and assorted hospital staff at UVA who are making Bob's stay a positive one. Your thoughts and prayers are always appreciated and I am so grateful to my friends and family for keeping in touch.

-Megan

An Update as of 2/5/16

A resident from Bob's neurosurgery team gave us good news today: They mapped out five seizures as of this morning! They still have to map where exactly in the brain those have come from, but they have captured some from both sides. Bob slept most of the day and I was able to have a long walk and dinner with my good friend, Pam.

This evening, Bob was given control of his pain medication which allowed him to be more comfortable. He was quite groggy and slept much of the evening. That's a lot better than being in pain, so I am fine with that. We tried playing cards tonight for a little while, but he was falling asleep sitting up so we didn't finish. I ended the evening by enjoying more of my book. 

Please continue to pray that Bob continues to sleep well and feel as relaxed as possible. Please also pray over the doctors and staff at UVA, we are so thankful for all of their expertise and guidance. Thank you to all of you for your continued prayers and kind words. They are healing to my soul.

-Megan

An Update as of 2/4/16

As of yesterday, the surgery went well.  Bob's surgeons placed the electrodes deep in the hippocampus, as well as on the right temporal lobe and the left temporal lobe. It took seven hours. The doctor said he only expected Bob to be in the ICU overnight, which turned out to be the case. 

Yesterday evening, Bob was foggy, but was able to wake periodically to say a few words. He couldn't believe that the surgery was already finished and that it was 7 PM. All in all, the staff were pleased with how he was doing.

This morning, Bob was settled into a new, private room in the epilepsy monitoring unit. Yeah! They gave him some stronger pain meds that kept him asleep for much of the day. I was able to enjoy a book that Maura recommended, "This House of Sky." It was nice to spend time thinking about being in Montana while Bob rested. 

Bob has 124 electrodes in his brain that are attached to monitoring equipment. While the staff were working on the electrodes, I thought Bob was sleeping through the process, but I was wrong! When they announced that the code for one of the wires was RFM, Bob chimed in that it stood for Really Funny Man. He loves to make people laugh!

This afternoon, Bob experienced his first big seizure during this stay. It took him about an hour to recover from it and he was fairly confused and dazed. During rounds tonight, I was told that the doctors retrieved strong data from this seizure. This period of monitoring will help us collect specific data as to where in his brain the seizures are starting so that we can chart a course of action.

We continue to be thankful for all of your kind words and prayers. Please continue to pray over the doctors and staff at UVA and for Bob to be able to rest comfortably. 

-Megan 

An Update- 2/2/16

After four hours of appointments to get all checked in and checked out (medically), we are all set for the big day tomorrow. We are finally resting in our hotel room, and will meet friends for dinner a little later. We are to arrive at the hospital at 7:30 AM. The surgery will start at 9:30 AM and last most of the day (Yikes!). They will come out every two hours to let me know how things are going. When they are finished, Bob will spend the first 24 hours in ICU. 

We learned that it is unlikely that they would keep him longer than two weeks of monitoring due to the risk of infection. One possible outcome is that if they find a clear focal point where the seizures are originating, they might just go ahead and do the resection right when they go back in to remove the wires. Or else they will just take the wires out ad then all of the data they've gathered will go back before the neurology team for them to recommend a course of action. 

I'll keep you posted as I get updates.

-Megan

An Update- 1/20/15

Bob is currently undergoing the WADA Test. The will last until this evening. He has to lay flat on his back for 3-6 hours. It is going to be a long day, but I'm glad we will be able to get it done.

-Megan

An Update as of 11/1/13

The last few days have been Murphy’s Law sort of days. First, Bob’s laptop died as he was trying to revert from Windows 8 to Windows 7. Then three separate things went wrong with our water, requiring us to call out three separate companies to set things straight. Then, to top it all off, our phones shorted out creating static and cross-over between our two lines. As he always has done, Bob took charge of managing all of the needed repairs as well as the comings and goings of the various contractors.

Our phones have been problematic for much of the last year, ever since we moved Bob’s office up to our dining room in the fall to make sure he was safe after we arrived home from our time at the University of Virginia medical center. Moving his office upstairs during that interim period meant that we also had to adapt our phone wiring so that his dining room office would have phone and Internet. That turned out to involved a lot of jerry rigging, and Bob had not really been as ready to take on that challenge as he’d thought he was.  

This time, I persuaded Bob that it would be worth calling the phone company for assistance. Chan, the guy who was sent out from the phone company, got way more than he bargained for.  When he arrived, Bob told him “this could take a while, our phones are really a mess.” Chan shrugged it off.  “This is what I do” he demurred. He got to work, with Bob in tow as the two of them puzzled over the confusing mess of wiring. Bob and Chan developed a sense of camaraderie as they worked side-by-side, testing wires and sorting out tangled circuits. Four hours later, the two of them laughingly congratulated one another for finally having gotten the whole system working properly.

That’s when I reminded Bob that today was the one year anniversary of his homecoming from Charlottesville. That day, as Bob wandered through the house with Bryn at his side, he was incredulous, arms outstretched in disbelief. “We live here?” he’d asked. “How did we come to live in such a beautiful place?” He had no memory of living in this home where we had lived for ten years.

At that point, we did not know how much of his memory or functioning Bob would eventually get back. We were just glad to have him alive and well enough to be back home. These days he gets frustrated that his memory issues are still such a challenge and he is not at the top of him game cognitively. But as we realized the significance of this anniversary, and realized just how far he has come, we couldn’t help but cry tears of gratitude in each other’s arms.

Thank you for the ways that you each have contributed to that healing through your thoughts, prayers, and acts of caring and kindness.

-Megab=n

An Update as of 10/27/13

https://www.youtube.com/watch?v=0L16DsNfM2o

On Sunday, Oct. 27, Bob was invited to preach at our church, the Williamsburg Unitarian Universalists. You can read his sermon at  http://www.lifetrekcoaching.com/provisions/20131027_Seized_by_Life.htm . As part of the service, I was invited to share the Call to Worship and a sharing time that we call “From the Heart.” My dear Erika asked me to share what I had said, so here it is.

Call to Worship

On a bright morning in late August of 2012, my husband Bob slept late. That was unusual for him, but he hadn’t been feeling well the evening before so I was glad he was getting a little rest. As I brewed a cup of tea for him and grabbed the morning paper to take to him in bed, I could not have imagined the ways that our lives were about to change—how serious illness was about to rock our world, to shake our assumptions, and to bring us into a close encounter of the mystery that lies just outside our awareness as we scurry through our ordinary lives.

A few moments later, as Bob carried that tea and newspaper to the kitchen, he was felled by a massive seizure. I heard him growling and turned the corner just in time to see him tumbling down a flight of stairs.

Bob was taken by ambulance to Riverside Hospital and a week later med-flighted to the University of Virginia Medical Center, where he was placed in a medically induced coma to stop the fire storm of seizures that was going on in Bob’s brain.

Three weeks later, on Sept. 28, as he began to come out of the coma, Bob began to open his eyes and was able to follow our movements around the room. The next day, I shared this news with our family and friends. 

Today was a happy day! Bob was more alert and more responsive than he has been since he was first sedated.  His eyes were showing recognition of us, and he could communicate by blinking his eyes. By the end of the day, he was able to nod slightly, make facial gestures, and mouth simple questions like “What happened?” and “When?”. He got a case of the giggles this afternoon, and his silent laughter was infectious even though it caused all kinds of alarms to go off on the breathing apparatus, and sent him into a coughing spell. [Such joy at finding himself alive!]

Bob is still extremely weak from laying in bed for four weeks without moving. Bob can move his fingers and toes now more consistently, and with assistance was able to move one of his arms up to scratch an itchy nose.

Bob really seemed to remember things that we talked to him about, like running marathons and where he grew up, as well as the family and friends that we talked about. His short term memory is not as good and may take some time to recover. So I answered his questions about what happened, when, and where we were many times throughout the day. I also told him again and again that thousands of people around the world were praying for him. He often mouthed “Wow” when I told him that.

As I was getting ready to leave this evening, Bob kept mouthing something that I didn’t understand. I reassured him the best I could that he shouldn’t try to figure it all out tonight and that he should try to get some rest, but he didn’t seem satisfied. It was breaking my heart to leave him seeming so unsettled, but it was shift change for the nurses and time for me to go. When I turned back one last time at the door, I suddenly understood what he wanted. He was saying “I want to pray.” When I finally understood, his eyes lit up and he nodded. I came back and offered a heartfelt prayer for Bob’s healing.  The anxiety melted away from his face, and I was able to leave him in a much calmer state. So I am pleased to add one more heart to those thousands lifting prayers for Bob’s healing -- that of Bob himself.

A week later as Bob was able to sit up in bed and was gradually coming more and more back to himself, he shared this poem by David Whyte called What to Remember on Waking. This poem  had meant so much to Bob even before he got sick that he had committed it to memory, but it took on entirely new dimensions as Bob was waking from a much deeper sleep.

            Video (http://www.youtube.com/watch?v=0L16DsNfM2o )

Come, let us explore the mysteries of intersections of life and death, and the ways some of those mysteries can be revealed in serious illness. 

From the Heart

I count it a privilege to accompany Bob on this frightening and uplifting journey of healing that we have been on. It is not over and it remains uncertain what is yet ahead. Bob still struggles with daily small seizures that we call “blips” and occasionally even stronger ones. His memory is significantly impaired, making it difficult for function in the ways he is used to. And, as predicted by the MRI, he is more emotional than he was, having become quite tenderhearted and easily brought to tears.

As I have taken on more of a caregiving role, I have been reminded of some truths that came to me as a young mother from a book called A Way in the World: Family Life as Spiritual Discipline.  In it, Ernest Boyer Jr. describes the spiritual intentions and ambitions of the ascetics who have chosen to live in harsh and barren places in order to deepen their spiritual awareness and knowing. Describing the challenges and demons they faced, the author then draws a comparison to the spiritual discipline of caregiving. He points to the demons of boredom and resentment, as well as the discipline of self-care.

Boredom. Caregiving often involves repetitive and sometimes monotonous tasks. We have no sooner finished the breakfast dishes when it is time to begin thinking about lunch. We tidy up the playroom in the morning, knowing it will have to be tidied again in the afternoon. The challenge is that the human brain seeks intellectual stimulation through novelty – people may find this in novels or movies, in music or travel. Learning to find a sense of meaning and purpose in the repetitive tasks of caregiving can be an arduous spiritual practice.

Resentment. When one party in a relationship needs greater care, whether due to youth, infirmity or age, it creates an imbalance in the give and take of a relationship that can lead to resentment on the part of the one who is giving greater care. Fortunately for me, Bob has been very expressive of his gratitude for my care, but for many care receivers coping with the discomforts and frustrations of their condition may lead them to be difficult, impatient and demanding. This can hurt the feelings of the one who is offering care and over time can lead to feelings of resentment. Learning patience in the face of impatience is another challenging spiritual practice.

These two challenges point to a third essential spiritual practice -- the discipline of self-care. In order to ward off the demons of boredom and resentment makes it essential that find ways to attend to our own needs in regular, consistent ways. This may be as simple as a daily walk to clear our heads, or quiet time in the mornings to read, think, or pray. But without this discipline, the demons are likely to loom large. 

This is not a journey that either of us would have chosen, and yet there have been incredible blessings along the way. One of ways we have been blessed has been the myriad ways that people have reached out to us in care. One of those that stands out in my memory is from an angel right here in our midst -- Sally Fisk. Sally was able to put into words how this experience of crossing over from the world of the well to the world of the not-well has unveiled some deeper truths. She wrote:

From my own recent illness, I have begun to learn the (both) heartbreaking and sometimes generously beautiful truth that life is a force beyond my knowing, beyond my control. I will keep my heart open and receptive during the cyclical twists and turns of Bob's, and your, healing. Gifts can come in unimaginable ways.

Over the course of my illness, the most challenging reality has been and remains the cyclical nature of healing. It is not linear. It circles up and down, sideways and back. I would make a step forward and feel the rush of hope, catch a glimpse of my old self, see the possibility of having my health restored. Then I'd stumble backward and fall under the crush of disappointment, and sometimes despair, exhaustion and fear. But then the cycle of healing would lift me upward and hope would come again, and yes, the cycle down also came again --- and again and again. It is very rough going, no doubt about it.

For those of us who are used to linear movements, quantum leaps, and seeing our intention and skills bring impressive results this cycle stuff is hard to take. The "set-backs" can bring us to our knees. But I can assure you that there is a strength building deep within you both. You will find your way out of deep water to the shore. There is something very powerful in motion. I cannot name it. But I have experienced it and received its gifts. You [my friends] will too.

-Megan

An Update as of 9-20-13

Bob and I have declared today, September 20, 2013, as his turning point day. We have just returned from a four day visit to the Mayo Clinic. The news there was not altogether good. Despite Bob’s diligent efforts to improve his memory using the computer program Lumosity, and our general impression that Bob’s memory for events during the past ten years was improving, his scores on his neuropsych assessment were no better and in some cases worse than they were in June. That test was what our neurologist was using as a marker for how much good the aggressive immune suppression was working. In addition, both of the neurologists we see at Mayo were concerned about the number of seizures that Bob has been continuing to have, even though the intensity of the events has improved somewhat.

What was encouraging was that Bob had a sleep study while we were there and he was diagnosed with sleep apnea. The study showed that his breathing stopped 50 times in two hours! That is not good news, except that it leads to a new intervention that we are hopeful can make a significant difference in the healing of Bob’s brain. “If you’re not getting a good nights’ sleep” our neurologist said flatly, prior to the sleep study, “then we are beating our heads against a brick wall.” Alas, it appears as though we have.

We also returned with plans to make a change in one of Bob’s anti-seizure medications, introducing a new medication and gradually discontinuing one that we have felt was causing some unpleasant side effects, such as a strange feeling up and down the left side of his body. We will also continue with the immune suppression infusions for several more weeks and then gradually wean off of them once we have a chance to see the effects of the new medication.

While we were at Mayo, our days were quite full with various medical appointments. One day when we only had appointments early and late in the day, we spent the middle of the day camped out in one of the waiting rooms as a “checker” for a third neurologist who we hoped to see. This is a big thing that is done at Mayo, when you can’t get an appointment with a doctor who you want to see, you sign in and then wait to see if anyone doesn’t show up for their appointment so that you can have their slot. We were not successful, and a nap probably would have done Bob more good, but at least we got to partake in that particular part of the Mayo culture.

We also managed to have three significant accomplishments while we were in Rochester. I, at long last, submitted my final revision of the second edition of my book Trust Matters to my publisher! It feels wonderful to have that project on its way to the presses! Meanwhile, Bob and Maura submitted a substantial proposal in response to an attractive RFP. And we had a delightful conversation with the superintendent of the Rochester Public Schools. So our week was productive even beyond the outstanding medical care Bob received.

We returned home last evening and spent today on a 13 hour odyssey from Toano to Newport News to implement these new treatments. There were phone calls to various providers, insurance permissions to sort out, getting fitted for his new CPAP machine, and a trip to a far flung pharmacy when our local pharmacy did not have two of the medications that Bob needed. By the end of a long day, we were finally able to accomplish all of our errands and returned home feeling hopeful that we are now on a path that will create the conditions for Bob’s brain to heal.

With that I will say “Good night, and sweet dreams!” We will be dreaming of nourishing sleep and healthy days ahead. 

-Megan

An Update as of 8-30-13

One year ago today, Bob slept late – which is usual for him. The day before, he had been so tired that he fell asleep while we were stopped at a stoplight while driving home from a workshop we’d given. So I was glad he was getting a little extra sleep. By 9:00 AM, however, I began to worry a little and decided to check on him. So I made him some tea and grabbed the newspaper to take in to him. I found him already up and standing in the bathroom. I offered him his tea but he refused to take the cup, saying that he felt strange and unsteady and that was afraid he might drop it.  

Little did we realize the terrifying and mysterious adventure that was about to begin. How could we know that that cup of tea would play a starring role in saving his life. As Bob carried his tea and paper to the kitchen, he must have felt something coming on. He bent to set that cup gently on the floor just before he began to seize. Because he was already so low to the ground, he slid down those stairs, rather than tumbling down from a standing position which could resulted in much more serious injuries.  

We could not have anticipated, on that bright sunny morning, that just two days later Bob would pass a terrifying night in which his breathing and heart would stop five times. We would never have guessed that he would soon have to be put into a medically-induced coma, and that he would end up teetering for days on the brink between life and death for three long weeks. And certainly we could not have seen the mysterious power of God played out in small serendipities and amazing convergences that have surprised and delighted us throughout this year.

I find myself with a jumble of many emotions as I reflect on the past year. The most prominent emotion, of course, is gratitude: gratitude for the gift of life, gratitude that we have each other as well as our children, and gratitude for all the ways that we have been cared for and held in prayer by such a large and amazing circle of family and friends. We are grateful for the doctors and nurses whose knowledge and skill has directed the course of this healing journey, as well as for all of the medical technicians who have run respirators and MRI machines, checked blood work, and administered all of the myriad tasks it has taken to keep Bob alive. It is truly awe-inspiring to remember and to celebrate all of the people who have contributed to Bob’s progress back to health. For each of you, we give thanks.  

I also feel a measure of concern.  Ten weeks into our 12-week experiment of aggressive immune suppression from the Mayo Clinic, Bob’s progress is modest. Bob continues to have one or two small seizures almost every day. Yesterday, he had three. Although these seizures have mostly diminished in intensity, there are still occasional bouts when they become more severe, especially when Bob gets engaged in something he cares about and overdoes it. After a lifetime of pushing through feelings of fatigue to accomplish many amazing things, including running more than 40 marathons or writing his weekly newsletter, it is hard now for Bob to develop a regular pattern of rest and recovery or to pull back and rest when he’s feeling tired. 

We head back to the Mayo Clinic on September 15 and we would ask for your prayers for the wisdom for our doctors as they make the decisions that will continue to guide Bob on a path that will we hope will lead to a full recovery.

For now, we are ready to celebrate! We are throwing a “Happy to Be Alive” party at our house this Sunday afternoon, September 1, from 3-8 PM. If you are nearby, we’d love to have you stop in and say hello. We are truly happy to alive! 

-Megan

An Update as of 8/13/13

My favorite part of our time at the Mayo Clinic in June was when our neurologist told us not to work so hard at trying to avoid seizures so as to stop doing the things that give our life a sense of meaning and purpose. We have really taken that advice to heart and have had a fun summer spending time with so many of the people we love.

In May we celebrated our niece Rebekah’s graduation from Eckert College in Florida and spent a week at the beach with our extended family, including time with Bryn and Evan. Then in June, after spending two weeks at the Mayo Clinic, we spent a week at the Chautauqua Institution with 17 members of our extended family ranging in age from 6 months to 90 years old (including our grandson Everest, our great niece Cora, her brother Tristan, the Jackson kids, as well as Bob’s Dad and Uncle Jim, his last remaining brother).

We were home for the month of July while I taught a course at William & Mary, and enjoyed engaging with my students. Then we were visited by our dear friend Jim, who made the mistake of mentioning that he wanted to come “help out”, and ended up washing every window in our house! (This, having just washed every window in his own house!). Then Jennie and two of the three kids that she adopted from Russia arrived and we celebrated the six-year anniversary of their adoption. On the heels of that visit, we got a call that Bob’s dad had been hospitalized for a case of Cellulites and we knew that Bob’s sister Laurel had to be out of town, so we hopped in the car and headed for Cleveland. We had a lovely visit there for almost two weeks as Dad daily progressed. At one point, I had to fly back to DC overnight for a speaking engagement and Bob and Dad looked out for one another.

We took the long way home from Cleveland, stopping in Toledo for another speaking engagement, and while we were there we popped in to see my cousin Alix and my Aunt Lois and Uncle Phil. Then we headed to Columbus for more time relaxing with the Jackson’s in their lovely new home before soaking up some of the good farm energy at Maura and Dave’s. Finally we headed back home again.

It is good to be home. We are filled with gratitude for the people we love and those who love us, those who we’ve spent time with and those who we have connected with virtually through this blog. Bob’s progress is very gradual, as they told us it might be. He has still been having nearly daily seizures, although the intensity and duration of them is less severe. Occasionally the more optimistic narrative of steady progress we are telling ourselves is interrupted by a more significant seizure or memory lapse. In those moments, we have to take a deep breath and steady ourselves, and then get right back to the things that give our lives a sense of meaning and purpose.

 It helps so much to feel that we are held in a warm circle of care. Thank you. 

-Megan 

An Update as 7/17/13

Dr. Pittock, our neurologist at Mayo, told us that it might take up to four weeks for the steroids Bob is taking to take full effect. So we have been holding onto hope that they just needed more time. Bob had his fourth infusion yesterday and while we have had a few seizure-free days that have raised our hopes, the partial seizures he has been having have not disappeared altogether as we wish they would. We were warned back in the fall at UVA that it is difficult to get a brain that is in the habit of seizing to stop seizing and that certainly has been our experience since April. It has also been hard to see a pattern for what precipitates these events. We were so pleased on Sunday when Bob had a seizure-free day despite a busy day swimming with our grandson Everest, playing Frisbee golf with Evan and his two friends Eric and AJ, and then working into the evening to install a ceiling fan. And then today he had three “episodes” on what was a relatively quiet day.

We have nevertheless not given up hope and are learning to be productive and happy even as things are now. So, one way or another, we are encouraged by our prospects and possibilities. Please continue to keep us in your hopes, dreams, and prayers.

-Megan

An Update as of 6/25/13

Life has been full and rich with family time since we left the Mayo Clinic on June 14. We were home only three days, busy catching up with things that needed attending to and repacking our suitcases. We then headed to Columbus, OH, where we presented a workshop at the Ohio Connect for Success conference on Wednesday afternoon, and then enjoyed family time on Thursday and Friday before heading to the Chautauqua Institution, where we are vacationing with a extended family group of 17, including our 11-month-old grandson Everest, and our 5-month-old great niece Cora.

In our final wrap up with our two neurologists at Mayo, the decision was made to stay with the plan of 12 weeks of aggressive immune suppression to “test the concept” that Bob’s current difficulties are the result of an ongoing immune response or whether they are instead being caused by the scar tissue that is in his brain. When we return to Mayo at the end of these 12 weeks, Bob will retake the memory assessment he had on this visit. If there is substantial improvement (at least 30%), then we will conclude that the immune suppression is having a positive effect. If there is no real improvement, then the conclusion will be that the damage has been done and that we will instead turn to achieving better seizure control and developing compensation strategies for Bob’s current deficits. So we have a lot riding on the next 12 weeks. Our neurologist is skeptical that this trial will be successful, and has estimated that we have only about a 20% chance that the deficits are reversible, but we are steadfastly holding onto the hope that things can improve.  

Although there are certainly moments of discouragement, there are also beautiful moments that renew our spirits. We had one such moment while we were home. After Bob had worked hard for several hours mowing the lawn and cleaning out the beds, he called me to join him on the dock. He was tired so we laid down on our backs and gazed at the sky. Although it was a cloudy day, there was no rain in sight. And yet, as we looked up in astonishment, a rainbow appeared sideways as if part of a halo over the earth.

This was especially significant because we chose the rainbow as the theme for the wedding 37 years ago, proclaiming that it was “a sign of the covenant.” We looked at one another and said “everything is going to be all right.”

An Update as o6/13/13f

After two months of too much seizure activity, it was a relief to land here at the Mayo Clinic last week and to have four good days with no seizures at all. It was as if even the air here contained a special healing magic. But then on Friday, Bob had one small seizure. This was followed by four on Saturday, five on Sunday, and six on Monday. Clearly things have not been going in the direction we had hoped. But at least we are here in the company of world experts who can be involved in puzzling through this mystery. On Monday, Bob was hooked up to a continuous EEG to gather data about the electrical activity in his brain.

This was to have been a two-day test, but on Monday evening he had a particularly long-lasting seizure. This episode was exasperated by a fire alarm in our hotel, with all of the noise of the alarms, flashing lights and sirens (it turned out to have been a fire in the elevator engine room). We were all evacuated and Bob and I kept walking away from the noise and took refuge in a small park in a nearby residential area. There were two young boys playing on the playground who kept looking over at Bob, with his head all wrapped up with gauze. So he went to chat with them to allay any fears they might have. He asked them what they were playing and they said they were playing Zombies. He asked what Zombies were and they confessed “We think that YOU are a Zombie!”  Bob assured them that if he WAS a Zombie, he was a friendly Zombie and that they didn’t need to be afraid. We got  chuckle out of that.

All of that noise and excitement was not good for Bob’s inflamed brain and we ended up going to the ER Monday night. The next day he was hospitalized to receive some strong steroid treatments and to continue the monitoring. Three days in, things have still not settled down to the extent that we’d like, so it may be time to consider even more aggressive treatments.

We’ll keep you posted. As always, we are so grateful for your continued love, prayers, and concern.

An Update as of 6/8/13

This is Bob, here, sending in an update from the Mayo Clinic in Rochester, Minnesota. I’ve been giving the world’s experts in my mysterious condition a real puzzle and even stumping them as to what is actually going on. The word is not all good and not all bad from the tests they have run, which will now continue on into next week. There has been and is some permanent damage to certain parts of my brain, especially the parts involving memory. It is not fully known, however, as to how much of that is recoverable and/or can be picked up by other parts of my brain. This is clearly a marathon and not a sprint. Fortunately, I have a lot of experience with marathons. The next few months will be crucial, with more tests and treatments. Life goes on – that’s the good thing – yet not the way anyone expected or would have desired. What a strange and curious time. Everyone’s hopes and prayers for a full recovery are appreciated. I love and value the community that is holding me and my family up in your thoughts and prayers and the work we all have yet to do together as a wide, extended community of hope.

That said, I want to share a wonderful serendipity. Early this morning I was feeling a little scared and sad about the challenges I have been facing so, while Megan was still sleeping, I went out for a walk to clear my head. The people at the front desk gave me a map and pointed me in the direction of Silver Lake Park, where they said I would find plenty of trails and inspiration. Setting out, I took pictures of landmarks along the way to make sure I would be able to get back to the hotel safely.

Much to my surprise and delight, I arrived at the park just as the gun was about to go off for the start of a 5K race that was devoted to raising consciousness about and money for cancer survivors. Showing up at just that moment was really amazing. I have not run an actual race, something that has been very important to me for many, many years, since the start of this whole ordeal as the end of last August. So seeing the race all set up, with all the people and balloons and support personnel, really started my adrenaline flowing. I immediately knew: I was doing this race.

The race was designed with two groups of participants: runners and walkers. I joined in with the walkers and I walked around the entire lake, never getting lost or dehydrated because the route was clearly marked with several water stops along the way. To my delight, I didn’t even come in last! This was the first race I have participated in since the start of this whole ordeal at the end of last August, and it felt great to be out on a course again. By the time I got back to the hotel, I had gone about 5 miles and then, later in the day, Megan and I went back over to the lake in our car, to walk around it again. She thoroughly enjoyed being outside, in nature, with the gifts of God so clearly at hand.

How could anyone plan something like that? To show up at a random place, at a random time, right when a perfectly designed race was about to start? Amazing! It’s enough to make you think that the anxiety and stress of this ordeal notwithstanding, everything is going to be all right.

 

An Update as of 6/4/13

We had a good first day at Mayo. Because it was drizzling rain, we decided to take the underground walkway to the clinic. It was a short walk from our hotel and we never even had to go outside. We were surprised, as we got off the elevator in the basement of our hotel, to find the walkway as busy and as crowded as any morning rush hour train! We took the plunge and joined the stream of people flowing briskly toward this medical mecca, the sick and the well together. 

When we arrived at our appointment, the waiting room of about 60 chairs was already filling up, even at 7:15 in the morning, with a long line forming down the middle.  Four women at computers worked to check people in at the front of the room. When it was our turn, we handed over the three sets of medical records we'd brought with us, along with five CDs of images, and we were given a pager.

When we got to see the doctor, he spent nearly an hour with us, efficiently asking questions and gathering information to piece together the storyline of the past 9 months. Bryn joined us on speaker phone and made an invaluable contribution. One thing that stood out to me in that conversation was that he said that people who he sees with this condition have rarely been diagnosed as quickly and had treatment begun as early in the disease process, and that Bob's current level of functioning and even his being alive is attributable to that, thanks to Bryn's tenaciousness. 

When it got to the recommendations part of the conversation, lots of information was coming at us pretty rapidly. Thanks to tenacity and good fortune, over the next three days Bob will have bloodwork done, a PET Scan, an EEG, an MRI, and three other appointments with doctors. Like our last hospitalization, they are being very efficient in gathering the necessary information to make informed adjustments to his treatment.

Dr. Pittock acknowledged that we don't know and can't know at this point about the level of reversability of Bob's current deficits, but we all remain hopeful that if we can get the inflammation to settle down, his brain can heal.

Thank you for staying with us on this long journey. We are grateful for your prayers.

Megan