Update 1-24-10

Gene’s Update: 1-24-10

The many flavors of anxiety: Today was a rough one… a stunning day in San Diego, the first clear, cool, crystal blue day after a week of storms, snow-capped mountains as far away as LA visible, a day when you actually see that San Diego is surrounded by mountains. I actually had some time outdoors while I waited for Gene to have his bronchoscopy. Although we thought we were in a holding pattern for awhile, and celebrating the final day of his first round of chemo, there were potholes in the road after the storms. Yesterday afternoon a pulmonary doc told us that they wanted to do this procedure…..think colonoscopy only through your mouth, down your throat and bronchial tubes and into your lungs….go ahead, gag and cough a lot just like Gene did. Then they flushed his lungs with fluid and sucked it back out, hoping to catch samples in there. They are concerned about the things they are seeing on his chest x-rays and chest CT Scan and afraid it may be fungal. Apparently fungal is pretty bad, can grow fast, can be hard to treat, can kill you. The pulmonary guy explained that if they could identify the fungus they could target specific drugs toward it, but did not want to treat with those specific drugs unless they were sure, as those drugs have serious side effects, like liver damage. He also felt he needed to do it right away, not usually done on Sunday, but a narrow window was available before Gene’s immunity was at its lowest level “nadir” in the next 3-5 days. So, although he explained the possible complications from the procedure as bleeding, introducing infection, respiratory failure and even death ( I know, they have to tell you all that), and that he’d be doing it on a Sunday in the ICU and calling in on-call staff….in the end you have no choice but to trust their decisions. Gene was less afraid than I, just not thrilled about the pending unpleasantness.

After several delays, they did the procedure, the delays and not knowing created high-level anxiety….you think you don’t know how to breathe…but he came through, of course. They say they “got what they needed”. They don’t have any results yet, or the ones they do have came back negative, but they started him on a new anti-fungal IV anyway. He was tired this afternoon, and dozed a lot. I went home for a nap for a few hours and Jim stayed with him, they watched the Saints win.

Patty had dinner ready for me last night at 10:30 when I got home and breakfast for me as I flew out the door at 7:30 this morning. She and Jim are just an incredible blessing. Jim has the yard all cleaned up after the storm, looking better than it has in weeks. Emilia, Gene’s sister, left today to take care of things at home. She’s on standby to come back when we need her, once Gene goes home, if not sooner. She has said that she is ready to come back “at the drop of a hat” or if she just wants to see her brother. Emilia knows that she is welcome here anytime. Gene is looking forward to enjoying some of Emilia’s great Mexican Food. Both Gene and I really thank her for all of her support when we really needed her.

This morning while I was waiting, I walked behind the hospital complex, it is right on Torrey Pines Golf Course where the “San Diego Open” (formerly Buick Invitational, formerly starring Tiger Woods) is set to start tomorrow. Quite an operation. The MetLife blimp was overhead, probably practicing as well. So if you watch it on tv, you might get a shot of the hospital….don’t know anything about golf, or I could tell you what hole we are looking out on….maybe I’ll find out over the week. Also on that walk there is a labyrinth, connected to the Scripps Center for Integrative Medicine. It is a replica of one at Chartes Cathedral. And it was quiet, no one around (except the flurry of activity on the golf course behind me), it was somewhat calming to walk it while I tried to find calm in what seem like non-stop squalls.

Tonight Gene has spiked a fever again, for the first time in over five days, so that is worrisome. He said he feels really tired, no energy….like he felt before his first transfusion. He’s coughing a bit, which they said is to be expected after the procedure. The nurse tonight is an “hourly”, only works once a month, so it is not as comforting as seeing the nurses we’ve come to know who are regular employees.

I’m going to try to go to work tomorrow, believing he is in the best hands possible and my presence won’t change anything (except make me feel better) and Gene wants me to go to work. One of Gene’s long-time friends and colleague, Kyle, just went through a long hospitalization with her mom before her mom passed away, and she had a lot of good advice, suggestions, and words of wisdom. We are in the eye of the storm….and that is where Gene needs to stay. I venture out, gathering the information, interacting with the larger world, trying to keep his world focused on calm and healing. We’ve suspended visits for a few days at the doctor’s suggestion. He said that as good as the visits are for Gene and for friends and family, they are also energy draining, and Gene needs to conserve all of his energy for himself. He turns the ringer on the phone off as well, most of the time. He’ll have it on between like 9-10 AM and maybe 12-1 PM, and in the evening when I am here to answer. Some calls have gone to the Nurse’s Station and we don’t want them to have to be our answering service. I hear the relief in your voices when you hear his voice, but if he doesn’t answer after 3-5 rings, just call me on my cell, 858-337-5358, and I’ll give you the update. But don’t worry and call the nurses, he just has the phone off so he can rest.

So, although there is scary stuff, there is also good stuff. Hopefully today’s adventures mean that they get on top of the fungal infection that they think may be present. He continues to receive so much support and love. Laura Hall and the Armijos and Jocelyn Love have brought gifts of food and love for the caregivers, and the caregiver has some incredible caregivers supporting her. The medical technology and available drugs are better than even five years ago…..we have so much in our favor. And as “punky” as Gene feels right now, he’s agreed to go for a walk in a few minutes. And Breezy is relieved, although she misses Gene, and the sight of Patty and Jim usually means that Gene and I are leaving her for a few weeks to head off to Hawaii or Hatteras, she is relieved that I, at least, am still showing up, and sharing her bed.

Thank you for all your love and support.
G

Gene wanted to contribute to today’s update, but he’s pretty tired, so we’ll get his input tomorrow, but he does want to extend his thanks for all of your care, concern, cards, gifts, prayers, support, energy and love.