Update as of 3/25/13

Today we reached another important milestone on the path back to “life as usual.” We moved Bob’s office out of the dining room on the main floor of our house and back to what we affectionately call the “World Headquarters” in the basement. This has involved some significant technology challenges, with dismantling and reassembling computers, monitors, a printer, and a fax machine, untangling phone lines, and sorting through piles of accumulated papers, pens, etc. It has been a big job, and we are not finished yet, but Bob has managed to figure it all out. It may take him longer than it once would have, and he sometimes makes mistakes that can take a long time to untangle. But I am impressed at how well he is doing at recovering his former capabilities, even for these complex tasks.

This move is an act of faith that the regimen we’ve now settled on of a burst of IV steroids every six weeks will be enough to keep Bob safe from seizures over the next five months. One of the puzzles of navigating Bob’s healing journey has been to know how much immune suppression to do and for how long. We’ve tried to negotiate an intermediate path, less severe than the four to six months of Cytoxan suggested by some experts. What the recent seizures have let us know is that we need a bit more than we’ve done and for a bit longer. So we’ve mapped out a plan to take us to the one year anniversary of the start of this adventure.

At the end of last week we were back in Charlottesville where I was attending a Women in Educational Leadership in Virginia conference. We joked that we’d made Bob an honorary woman because he now is so easily moved to tears. While there, we went to visit two of the doctors who cared for Bob this fall, as well as many of the nurses and therapists who worked with him. Both doctors were incredibly generous with their time, each spending over an hour with us. Everyone was so pleased to see the tremendous progress that Bob has made, despite his continuing challenges with memory. We will be forever grateful for all of the people who participated in bringing Bob back to life.

Life has assumed a close enough approximation to life before that even if it were to plateau at this point we could manage and be very happy. But with Bob’s boundless curiosity and drive, we are hopeful that his progress will continue.

Thank you for being among the cloud of witnesses who have held Bob and me in your hearts throughout this healing journey.   

-Megan

An Update as of 3/8/13

It seems that Bob’s well-intentioned but misguided immune system is once again getting riled up in some unhelpful ways. In the past few days, Bob has had several small neurological incidents and one small seizure. Both our neurologist and Bryn agree that another course of steroids is in order to try to calm things down before Bob’s immune system goes on the attack in even more aggressive ways.

As anyone who has struggled with an autoimmune disorder can attest, trying to reset a overzealous immune system so that it keeps attacking the very real threats that it is supposed to protect us from, and stops attacking our own vital, healthy tissue that we need to survive is no small matter. It is an imprecise science at best, and the tools the medical profession have at their disposal, while so much better than they had even a generation ago, are not able to target specific functions to turn on or off. So we keep trying our best to calm down the immune system without turning it off altogether which would leave Bob defenseless in the face of even everyday germs and bacteria.

These ongoing challenges have not kept us from having a good time while we are here with Bryn and Andres. On Tuesday, we traveled to Zion National Park and spent our time there is a state of awe and wonder at the majesty of the natural beauty there. Bryn was a little nonplussed when one of the rangers asked her if she was on spring break, perhaps thinking she was an undergraduate. She said to me “You’d have been happy if they’d asked YOU that!”, and I said I would have replied “As a matter of fact, I am!”

We also had a lovely visit to Lake Las Vegas, where there is a small artsy community on the shores of the lake. We had a scrumptious lunch there and then spent a little time wandering the shops when something very surprising happened. Driving the 25 miles from downtown to this small community, I had commented about how much the terrain around Las Vegas reminded me of parts of Israel we’d visited. I had been thinking about our time in Israel lately because just a few days before we left to come on this trip, Bob and I finally got around to hanging up the pictures in the lower level of our house after the mold remediation we’d had done over the holidays.

Among the pictures we hung was a piece that I’d bought when we visited the ruins of King Herod’s Palace at Caesarea in Israel. There is an artsy village there and in one of the galleries, I was taken by the bright painting produced through a unique process made from the dyed fibers of recycled pop bottles. I had never bought a piece of original art before, but I fell in love with the whimsical birds and decided I had to have one. I selected a small piece about one foot square to serve as my souvenir from our trip. But now, as I was re-hanging that piece in our basement, I thought that my little bird looked lonely and I was wishing that I’d bought two. The thought crossed my mind that I could probably find that gallery on the Internet and buy another. But those are the kinds of thoughts that tend to cross my mind, and not get acted on.

Well, here we are a week later strolling around this small, sparsely populated village in the middle of a desert and wander into a gallery to find the same bright paintings I had seen in Israel!  And there are my whimsical birds, along with the artist, Alycia Dighorka, herself!  She had moved from Caesarea and had just opened this gallery in Lake Las Vegas in December.  She originated this unique form that she calls “soft paintings” and is the only one in the world to use it (www.artnova-nv.com).  Of all of the places on the planet that she might have landed, here she was in Lake Las Vegas and we ended up there as well. As you might imagine, I am now in procession of my second piece of original artwork, and  my little bird will no longer be so lonely!

When something that strange and wonderful happens, I just have to believe that in the end, everything will be all right. 

-Megan

An Update as of 3/3/13

We have now reached the six months mile post in this healing adventure. We had a discouraging moment on Thursday when Bob broke his month-long winning streak and had a full-blown seizure.

Bob had gotten up early that morning and had been working intensely for several hours because he finally had the tools he needed to get all of our electronic devices talking to one another. On top of that, we were packing to leave town for a week to visit Bryn and Andres in Las Vegas, with the time pressure of a flight to catch in DC. I came in from taking the final load to the car, singing out that I was ready to go, and I found him standing and staring in the hallway, near the top of the same flight of stairs that he’d fallen down on August 30. I was so thankful in that moment for the gate that we’d had installed at the top of those stairs! I went to him to hold him and he collapsed into my arms. I was able to gently lower him to the floor, where he laid for several long minutes until he began to regain consciousness. It worried me to think of what a fall he might have taken if I had not been right there at that moment.

After Bob began to emerge from his confusion after the seizure, I was uncertain about whether to postpone our trip by a day or to press on. I called Bryn and she thought that because the first leg of our journey was a two-hour drive in which Bob could rest and/or sleep, that it was worth continuing on, knowing that we could simply stay with Evan and Michelle overnight in DC if there were any further problems. So off we went, and other than having to maneuver around DC traffic at rush hour, everything went smoothly for the rest of the trip. We both slept well on the plane and we arrived in Las Vegas that evening in fine shape.

Bob did have one additional neurological blip on Friday when we got off schedule with eating so his blood sugar got low, and his left leg gave out on him when we were out for a walk. Both of these incidents have been potent reminders of the ways that we need to make different choices in the balance between self-care and the very enticing prospect of getting just one more thing ticked off our task lists!  

We have been very much enjoying our time with Bryn and Andres. The weather has been lovely, so we have enjoyed relaxing in their backyard. Yesterday, we went hiking on the red rocks of the Valley of Fire National Park. It was spectacular in its beauty! In the evening, we went to the Stratosphere and had a delightful dinner overlooking the city with Bryn and Andres’ friend Tracy. Afterwards, we enjoyed the Frankie Moreno show, thanks to Tracy, who knows Frankie and scored some last minute complementary tickets! To get to the restaurant and show we had to walk a short distance through a casino. That is the one thing that I had hoped to avoid while here, because of all of the blinking lights and noise. But it turns out to be harder to avoid than you’d think, as there are even slot machines in the airport! And fortunately, Bob did just fine. Note to self: what a difference staying on a regular schedule of sleeping and eating can make in terms of healing and neurological health!  

These latest episodes have again raised the question of whether we have done enough immune suppression to have reset Bob’s wayward immune system to keep it from attacking his brain. We’re hopeful that these were isolated incidents and that he is back on track to a calm, healthy brain!

Thank you for your continued caring, kind thoughts and prayers. 

-Megan