Wednesday, March 05, 2008

Where we are five days after surgery

Hi all: We are back on the bone marrow floor, in Green 1174, under the care of Dr. Andersson and his team (plus many consulting doctors). With the surgery, pneumonia, six or more medical disciplines involved, and the complexity of John's neurological symptoms, we've been constantly in motion since our last post. My part has been talking with doctors and nurses, helping them with John's day to day care, getting and heating foods that are appropriately "soft"to please the swallowing therapists, feeding him, asking nurses for things he needs, adding thickener to his water, etc. Mason has helped a lot with this too from last Wednesday to this Monday.I've really been wanting to write you guys and am so glad to do it now.

To explain what is going on, I'll chunk down the phases involved in John's treatment since the surgery and going forward--and give a status report on each. Basically the somewhat overlapping stages I see are:
I. Recovering from brain surgery and leftover pneumonia
II. Waiting for pathology report and diagnosis
III. Treatment based on II
IV. Rehabilitation to return walking, talking, short term memory, and swallowing functions

Phase I Recovering: We're still in the middle of this. Today right side of John's face near surgery area is visibly swollen. Max, our very smart Russian nurse doesn't know how much of this is normal and how much isn't. A resident from neurosurgery popped in this a.m. very quickly but we didn't get a chance to have a conversation about puffiness and pain in the area of the surgery, partly because it wasn't as evident then. Max reccommends we discuss it with Dr. Forman, as he is the neurologist. I will phone Mary Miller, his efficient nurse, and she is likely to send Dr. Forman over. In addition to the surgery pain, John was up all night with coughing. Pneumonia is better but not completely gone. Andersson and team put him back on vancomycin for the pneumonia. Meanwhile John still has severe balance problems, slurred speech, and short term memory problems. I think the swallowing is better than it was last week. John did pretty well right after the surgery and over the weekend and hugely enjoyed the visits of (in order of visits) Mason Carroll, Peter Slatin, Dana Fris-Hansen, Mark Holzbach, Marianna Adler and Rick, Bill Nemir and Rino Pizzi! For me, these visits were a lifesaver!! Peter and Mason were with me in the waiting room during the long surgery on Friday and the hours and days afterward.

Phase II Waiting for diagnosis: Today Dr. Andersson received the pathology report which he briefly discussed with us. Since it's all about the brain, he wishes to discuss the biopsy findings with Dr. Forman as well, as they are somewhat confusing, and he will send in Dr. Forman. Basically the pathology report says that:
-There is no lymphoma or leukemia
-There is evidence of past bleeding
-There is evidence of necrotic tissue (from the combination of radiation and steroids or from one of these)
-No specific fungal, viral or bacterial infection was identified

I will update you guys on interpretations of these items and any more I am missing in the next day or two after I have talked with Dr. Forman. I am personally feeling overwhelmed by the nebulousness of what we have learned so far and I think Dr. Andersson is too. My sister Patti and her husband Dennis will be here this weekend visiting with us.

Phase III Treatment: (This is my surmisal:) Will be based on the doctors' understanding of II. Mason and I have heard of and read about treatments for necrosis in the brain (from whole brain radiation) using a hyperbaric chamber and also using steroids. Use of steroids is a disturbing as I believe it was the steroids that interacted badly with the radiation to cause these problems. We didn't seem to have the problems til well after steroids were on board.

Phase IV Rehabilitation: Will be a huge and necessary component, probably starting here and continuing in Austin. Will involve occupational, physical, speech, swallowing, and other kinds of therapies, up through use of additional adaptive technologies if necessary to do his job if right hand is unable to get full function re: typing.

What makes this whole long process easier is knowing you are out there--through your visits, emails, calls, and so many many acts of kindness. John has said that what he fears most is being cut off from people. What I fear the most is the exact same thing. It's hard being physically away from you, living on this strange planet--as positive and smart as the inhabitants are.

Sending more big big hugs your way
Love, Anna and John


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