Dispatches from the ICU: Saturday, 5 pm

Hi all. I wanted to provide a quick update. On Wednesday (or Maybe it was Thursday -- the days are blurring a bit), the Infectious Disease team performed a bronchoscopy in the hopes of identifying the source of his infection. The preliminary results were negative for anything hostile. Although that sounds good, it's not particularly helpful, as it doesn't provide them direction regarding what anti-biotic they should be using. It's important that they limit the number of anti-biotics he's exposed to as they can be toxic to his kidneys, which are already working overtime.

On the Arnie comfort front, he's still sedated -- and thus sleeping about 24 hours a day. A ventilator is providing the finest oxygen the University of Chicago has to offer, 'round the clock; the dialysis machine is humming happily. In total, he looks almost exactly like he has for the last two days: thoroughly asleep.

I'll post updates as they happen.

Zach

Like 10-Year Olds

The long delay in writing has brought us to the end of August. I've been steadily recovering, my circle widening and I'm getting stronger week after week. One morning over this recovery period, I felt touched by the human spirit, like a bolt of light energy, that made me feel that I'd make it, that I'd been given the gift of recovery, that eventually I'd be all right. Over the month since I've left the hospital Dr Godley has moved my clinic visits to every other week, a huge change. Now I know what a bird feels like leaving the nest. It's hard to stray too far from the source of life but, for me like the young bird, it connotes progress, a change in status, a move toward Independence.

So, why the headline, what does that have to do with any of this? Well, tomorrow morning, MJ and I will hit the road on a 14-day trip that will include a stay on an island in Lake Erie, a wedding in rural Pennsylvania, NYC for the best of urban culture, food and visual treats, Washington DC to see Zach and a final few days in Annapolis with MJ's sister, maybe sailing, maybe eating, maybe playing cards, maybe laughing, maybe all of those things.

However, this is more than a trip, it's a sign of change. This trip will be the third time we've planned an escape of some kind. The previous two were interrupted by profound and rapid changes in my health. Tomorrow is real lift-off. Tomorrow morning at dawn in the Prius loaded with road food, fresh clothes, a full tank of gas and a fully-loaded GPS, we'll be heading into the morning sun, smiles on our faces, fresh coffee in hand heading east. And like I felt as a young boy heading across the desert to the California coast in the '48 Buick at midnight to beat the desert heat, my sister and I tucked in the back seat of the Buick that was roughly the size of a contemporary apartment bedroom, fully alive with anticipation, the thrill of travel, of change, of the ocean. Mary Joe has her own memories of these times as her father traveled the world with his family as an officer in the Air Force. The wonders of "going" were and are the same.

Like 10-year olds, we won't sleep much tonight.

With love,
Arnie and MJ

A good Friday

Arnie's on oral prednisone and able to leave here. There is a multi-function recliner chair with it's own little rooftop waiting for him on the deck. Everyone's flurrying around ordering final treatments and determining which drugs need to be written and by whom. Stitches coming out. Arnie looks great. Skinny. Finicky about food. Trying stuff. And when he's outahere, he stands a much better chance of finishing his food before he has to be interviewed by health professionals who inquire about his appetite. Now his cinnamon roll is cold and laying on a surface. And to be left alone all night to sleep will probably help, you think? Uh oh. A problem removing the sutures is probably going to involve getting the thoraxic team's involvement. So close! More soon. But I have to believe he's still getting out today. Thanks for the cards Kids and comments. MJ and Arnie

Monday Again

What he came here to do last Monday night has been accomplished. The lung and bone marrow biopsies are completed. The intestinal thing is culturing. The top line diagnosis of the lung tissue is Graft vs Host Disease which they will treat starting today with 4x a day injected steroids. MRSA (stands for something like common antibiotic resistant staph, common to hospital workers and people who have a weakened immune system) also showed up in the earliest lab results. They'll start treatment of the GVHD here at the hospital, it can't be done at home because of its frequency of dosage. Though all the results aren't in, the pulmonologist doesn't want to wait. I believe testing for progress will be done with CT scan only, in addition to improved symptoms. But, he'll need to be here for, I could say several more days, but I don't even annoy them by asking anymore. How can they possibly know--but when the dose is reduced to fewer injections, and maybe oral prednisone, he'll go home. Soon, I predict, he'll be bored and irritable, a sure sign of improvement. For now, he's drifty and recovering once again from the anesthetic administered for this morning's bone marrow biopsy. More soon--it should be much better in a few days. MJ

Day 5 Friday the Fourth

Arnie had the lung biopsy procedure Wednesday. Recovered in ICU Thursday. Is on the 3rd floor now being monitored. Each day he looks better. Can't eat though. Looks like a coat hanger, but his color is good. I've got tons of plants on the rooftop deck to surround him when he gets home. Jake got him a deck chair that reclines, has a footrest and a sun roof. So, recovery at home will be to Arnie's liking. Hot, sunny, with lots of trains going here and there. Erica's coming to the hospital tonight and today we're watching movies and documentaries. At some point, they'll do the bone marrow biopsy and they're trying to decide how best to proceed to discover the source of the intestinal difficulties that have gone on so long. Thank you for the cards you've sent. It's such a pleasure to bring him those personal notes from loved ones. We're on hospital time now, and it's a holiday, so not a good time for being impatient for results, so we're trying to become bovine about our expectations and timetables. Drugs and movies help. Let's say, we'll know something in a week? Until then, assume he's resting round the clock and he really does look good. Having hair helps, but his color is great. Mary Joe

Arnie's goin' back in the big house for a week

Arnie’s packing up to go into the hospital for a one-week stay. They have not known the origin of the problem in the GI tract, and something mysterious, which may be Graft vs Host Disease appeared in the lungs during a CT scan this morning. Drs Godley (onc) and Mulane (immunologist) concurred that it’s time to get to the bottom of what’s causing his malaise, fatigue, lack of appetite that has been steadily increasing over the last three weeks. Three weeks ago, we were charting our course to see Zach in his triathlon, today, that seems ludicrous. While they have him sedated for the open lung biopsy, they’ll perform a bone marrow biopsy and within days, or perhaps tomorrow morning, do some GI scoping. What’s up with the lungs may be entirely different from what’s up in the gut. They’ve tried changing medications and waiting and seeing etc, I’m really relieved that this is taking place. I’m hopeful that when they know what to treat, they’ll no doubt know how to treat it. And this gradual decline has been disheartening to say the least. So, in a week, he’ll be better and moving in the right direction again. So, a week of biopalooza, and a whole new deal. More later, Mary Joe

Time Flies

Its been a little more than 2-weeks since my last post. I didn't realize It had been that long, but each day is much like the others in some form. The idea of being as free as I am to deal with my recovery is both a blessing and a interesting kind of curse. The blessings are obvious and truly make my recovery an experience that allows me the freedom to focus on healing, be at my various clinics when they'd like me there and not have to negotiate my time with an employer. In truth, I wouldn't know how to cope if I had many other masters to serve besides my illness. 

I've had a good run of healing in the last 2-weeks. The spot on my lung didn't show anything, either fungal or otherwise, but it looks to all, who make their living interpreting such things that it is consistent with fungal growth. Basically the sample was so small that it didn't grow anything period. I've seen a few specialists since and they are agreed to basically treat it as fungus and watch it.

My energy has been good and my blood work is "perfect" according to the lovely Dr. Lucy Godley, my oncologist. I have to say the team has been really great to go through this with, they have enthusiasm, compassion and a upbeat manner that gives me courage and a since of progress even when I'm feeling progress is too slow or simply like a dog, chasing its own tail, never winning, but never loosing either.

I believe that's it for the moment. Take heart that things are progressing, it's still a long time to normal, but I feel better each week. When I don't feel I'm making progress, I try to remember that in March I couldn't even get around to my clinic appointments without a wheelchair to get from station to station. Oddly enough the wheelchair was an improvement over the previous months, so everything is relative and context always informs where you really are.

Thanks always for keeping track and keeping in touch through this wonderful tool. I'll keep posting.

Arnie