Independence Day
I arrive around 10:00 AM after sleeping at home. I feel a little ashamed of myself, since I told Don I would be back by 9:00 AM. But there was so much to do at home. When I arrive at his room, he is not there. The nurse says he was taken down for the follow-up MRI about an hour ago and should be back soon. Indeed, he arrives on a rolling bed just about then. He tells me Jnani and Davis have already been to visit him. I'm sorry I missed Davis: I wanted to hear how his trip to the Far East went. He brought Don a statuette from the Monkey Temple in Kathmandu, plus some smaller ceramics and papers that look like they were meant to be burnt.
He mentions to me that he is having double vision. When a nurse comes by later to ask him how he's doing, he fails to mention it. I do, and the nurse takes due note.
Jennifer comes by bearing suflowers, grapes, and candied ginger. The three of us decide to go down to the Cafeteria, but Don has to go in a wheelchair. The nurse explains that it's an insurance thing. "After all," she says in mock seriousness, "if he's well enough to walk down to the Cafeteria on the second floor, why isn't he well enough to walk down to the first floor and right out the door and go home?" We all agree this is stupid, but what else can you do with the fucked-up health care system we have in this country?
Don and Jennifer had a heart-to-heart talk over coffee (too much in too large a cup, which managed to slosh about). Afterwards, Don and I returned to his room, and then took a real walk down the corridor to the solarium. I wanted him to become familiar with the location in the hope that we might watch the fireworks from there. His gait was unsteady and asymmetric, and he seemed to tire easily. When we got to the solarium, we noticed that many of the flowers that Don had received last week were still alive and sitting in vases on the window sill. They seemed like old friends we hadn't seen in years.
When we returned to his "step-down" unit room, the nurse was just finishing putting the sunflowers in a vase. She apologized as soon as we entered the room. While trying to fit the vase on the window sill, she had knocked over the statuette Davis had left Don and broken it, decapitating the figure in low relief on the front.
About an hour later, another nurse entered the room. We had never seen her before and, aside from this one visit, we never saw her again. Her only purpose in intersecting our lives was to sweep into the room, say, "You can't have those in here," grab the sunflowers, and leave.
Don was transferred to a private room in the evening. It was just around the corner from his previous room and on the corridor we had walked down to the solarium. Jim arrived just as we were moving and helped with the stuff. He left before it got dark.
Around nine-thirty, Don and I retraced our steps to the solarium. Chris and his wife Kathleen were already there, and soon the room filed up with other brain and spinal surgery patients and their families. There was a simple commaraderie in the room. Everyone enjoyed the same beautiful displays, saying "Ooo" and "ahhh" in unison, like a memorized litany. We recounted stories of past Fourth of July's, or of other amusing or disasterous encounters with fireworks. And we all kept the same silent hope inside, wondering aloud at the marvel of a clear night in San Francisco in July, keeping to ourselves the wonder of being able to hold on to our loved ones for one more celebration, one more good time.
I slept with Don on the hospital bed, which was cranked up at the head and bent at the knees so he could keep his head elevated. Don seemed to sleep well, but it was infinitely uncomfortable for me. Nevertheless, I couldn't have been happier anywhere else.
After Surgery
Around 8:00 AM, Dr. Zakhary came by and removed the dressing over Don's incision. We are disappointed to discover that this time they've used sutures, not staples. I tell Don he'll have to find something else fabulous to wear to the Dore Alley Fair. Dr. Zakhary asks if Don would like physical therapy while he's recovering in the hospital. Don hesitates. Remembering our shuffling walk to the solarium yesterday, I tell him, "Say, 'yes.'" He says, "Yes." Dr. Zakhary says she'll sign him up. She also says we'll get a visit from Dr. Berger and hear from the neuro-oncologist today. The very term "neuro-oncologist" makes my skin crawl.
Don is curious about his scar and stitches, so I draw him a picture of it. They've used the same inverted U-shaped incision over his right ear that the surgeon at Santa Rosa laid down, but they've also added a little "spar line" pointing toward the back of his head. We decide that he should get a monocle and a cigarette holder and dress as Fearless Leader from Rocky and Bullwinkle.
A physical therapist arrives around 9:15 and he and Don go for a walk, including going up and down a flight of stairs. When they return ten minutes later, the therapist says Don's strength and balance are "excellent." After he leaves, Don says he enjoyed holding his hand the entire time.
Dr. Berger's nurse, Marylou, arrives to see how we're doing and to tell us they are going to discharge Don this afternoon! She tells us that they're going to set up an appointment for Don on July 12 to remove his stitches. She says we should also have a Dilantin level drawn then to see that it's still in the right range.
Around 10:25, Dr. Prados, the neuro-oncologist, arrives. He says there is no pathology report yet. He okays the notion of doing radiation therapy at Stanford and tells us to get ahold of Dr. Kendra Peterson, the neuro-oncologist there. He says his brief review of Don's charts show there was nothing suspicious in December. I infer from this - though Prados does not say so - that Don's tumor grew rather quickly.
Don asks what the pathology report is likely to reveal. Dr. Prados does a brief tour of various kinds of brain tumor. He advises us that there are grades of tumor, the grade being determined by the rate of growth. Meningiomas are one type of tumor. They tend to be localized and slow-growing, encapsulated, and easily removed. Other types of tumors cannot be so easily removed because of micro-invasion into other, nearby cells. Astrocytomas are one such type, and they, too are graded on their rate of growth and on how many of the cells are growing. Growing tumors are fragile, he says, and are very susceptible to radiation.
Don says, "I've always had confidence in the ability of Chinese medicine to build the immune system. It seems to me that now, with the tumor debulked, would be a good time to boost the immune system to get at the rest of it."
Dr. Prados says, "If the tumor is slow-growing, there's time to investigate many different therapies. If it's a higher grade, a grade four, then it's doubling every three to four months. Then, there isn't as much time."
"I wasn't thinking of it as a substitute for the standard therapy," Don says, "but as a complement to it."
"Some of these medications haven't been fully characterized yet," Prados warns. But then he adds, "My work is in medical research. All I do is take care of people with brain tumors. I'll help you set up a therapy."
He tells us to call his office to set up an appointment to see him on July 12 when we return to have the stitches removed.
A pharmacist arrives to tell us how to follow the step-down schedule for Don's dexamethasone. Apparently, it's one of those drugs that does real harm if withdrawn suddenly. So many of the drugs related to brain disease seem that way: lifesaving when administered, but life-threatening when withdrawn. I take one look at the schedule and know that Don will have trouble following it. I'm glad he'll be coming home with me.
At 2:00 PM, Don is discharged from UCSF. By 3:00 PM, we're in Mountain View. We pick up his prescription, which the pharmacist had already phoned in to my local Safeway, and then head for home. It is a great relief to settle him in and see his wonderful face smiling up at me.
Don in Stitches
During idle time at work Friday afternoon I decided to cruise the Internet to see what I could find out about brain tumors. I shouldn't have. The more I read, the more frightened I became. I read about meningiomas and astrocytomas, but the biggest, nastiest thing was something called glioblastoma multiforme. When I looked up references to it in the NIH database and other sources, I kept coming up with the same figures: fifty per cent. fatal within a year of diagnosis. From what I'd glimpsed of the MRIs, and from what doctors and interns had said about it being "high grade tumor," I was fairly certain that this is what Don had.
I shouldn't have looked.
We went to the FrontRunners in the morning, where we ran into Arveda, the realtor who helped me find and buy my house. We also did the coffee thing. Later in the afternoon, we went to Kim and Bennett's for a BBQ. The sun grew hot where we were sitting, so we went off to a quiet corner near the hot tub. There, I confessed to Don that I was pretty scared of what the diagnosis on Monday would bring. He said, "Whatever will be true then is true now, so there's no use in worring about that. This moment is enough." I agreed. Just sitting with him on a warm summer evening was enough.
Arveda and Don