Paul Justice made a special request to post his favorite Valles Pic...titled, "Valles On The Can."
Enjoy,Jose Luis
Sunday, January 31, 2010
Favorite Valles Pic
Hola A Todos,
Paul Justice made a special request to post his favorite Valles Pic...titled, "Valles On The Can."
Enjoy,
Jose Luis
Paul Justice made a special request to post his favorite Valles Pic...titled, "Valles On The Can."
Enjoy,Jose Luis
Friday, January 29, 2010
Update 1-29-10
Gene’s update: Jan. 29, 2010
Breathe a little more deeply: Although they still do not know what is in Gene’s lungs, what they do know is that it is getting smaller, there are no new spots and it is not aspergillis, the fungus they least wanted to see. So, hopefully that means that there is no need for a drug with potentially stronger side effects, that it is clearing, and that it may not interfere with the timeline to go home, or for transplant.
Fevers are still spiking, though over the number they consider fever (100) on Thursday, was yesterday only high 99’s. Gene himself has come up with a theory on what may be causing them, as the docs continue to say they do not know. Days after he went into the hospital, he was scheduled for periodontal work on some persistent pockets in his gums that do become inflamed and do need to be oral-surgically addressed, and yes, that he had procrastinated about. He said that if he flossed regularly he could keep the inflammation at bay, but he has been under strict no-flossing orders since he got admitted, as they said, flossing dislodges concentrated bacteria between your teeth. Doc A said to tell Doc B when he sees him today…..so we’ll see what they think of that theory. Even if it is correct, not sure what they could do about it.
Gene thinks his hair is thinning. No clumps, but he said there is more in the shower drain, more in his comb, more can be seen sitting on the shoulders of his dark green vest. So Manny, his nephew, who also lives here in San Diego, is coming over today to give him a very short haircut, to help ease the transition. I took a few pics last night, he actually didn’t mind, so that we could have a “before and after”. We’ve discussed the kind of hats that he thinks he wants….will need to look for them this weekend. One he described as a hat like he has seen some Muslim men wear. It is like a pillbox, or short cylinder shape, made of cloth, sometimes a narrow band along the opening. I have no idea where to find something like that. Although the “7-11 Mosque” is right here in Clairemont, only a few miles from the house, don’t think I’ll start there. I’ve been thinking about the skull-cape type of hats that the skaters, and other young people wear, and thinking that might be good to keep his head warm, but still be soft, and maybe a bit stylin’. I know the hair thing will be a difficult transition, because until now he looks exactly the same, perhaps a bit paler. And he is a hairy-headed guy! Facial hair they say possibly a few weeks after that on top of his head, so that might help smooth the way.
And then there is the heart / breathing thing. One day a few days ago he said he felt a pinch in the area that the picc line goes, basically into his heart. It actually goes into the aorta, but when we were watching the EKG, you could get a glimpse every once and awhile. He says that for the last few days when he takes a sudden deep breath, he feels “pressure”. So, yesterday they ran a clot-scanning machine. I wasn’t there for that and Gene forgot to tell me, but Patty did. So they hooked him up to a heart monitor for 24 hours. So when I got there, he had the IV line, (which he can now get unhooked from for several hours a day) and then all the heart monitor wires with the box that is the wireless transmitting unit. Made those full-body healing hugs a bit difficult. He keeps his sense of humor though, saying that he’s not telling docs anything new that happens because when he does they “do something to him”. He doesn’t mean it though. The good news is that they are monitoring him SO closely. Not sure how that will translate once he is in outpatient status.
So even though I’ve complained about no weekend, it really is the weekend, and there really is one. It means that I can take a bit of time in the morning to think, that we can visit each other during the day, instead of the last few hours of the day when we are both very tired. And some time to do some of the very few errands that Saint Patty and Saint Jim haven’t jumped in to do, only because I’ve not asked. I had a good canyon walk with Susan yesterday, convincing myself that snakes don’t like mud. Work has been easy this week, I’ll have to get a bit more deeply involved next week, taking on some of the more taxing parts. Maybe even get a walk on the beach this weekend. We’ve kept the “No-visitor” policy all week, and it has proven to be a very good thing as Gene is finding time for a short morning AND short afternoon nap, which is what the docs would like. So, I’m thinking that this weekend, while he is still at his lowest, that we’ll keep the visits on hold. I’ll give calls to the folks that we had to cancel last weekend, and maybe see if we can get you in for a short (15 min.) visits late in the afternoon, but I’ll contact you. Hopefully next week he’ll begin growing the right kind of white cells, and will have a bit more energy. He is into his second kindle book.
And your gifts and cards just keep coming! Thank you, thank you. We really want to respond to each one, but it has been overwhelming. A bit like a wedding with all the gifts for us…..from the SpEd folks, a healthy dinner delivery service….what could be more perfect? Books, movies, candy, healing icons, goodie-boxes of healthy and time-filling things, food and more food, and above all your support, wishes and prayers. Gene says he has no doubt that he’ll be back at work in August. Until then, I can’t imagine being more supported. Thank you, thank you.
Gail Moriarty
gail.moriarty@me.com
Breathe a little more deeply: Although they still do not know what is in Gene’s lungs, what they do know is that it is getting smaller, there are no new spots and it is not aspergillis, the fungus they least wanted to see. So, hopefully that means that there is no need for a drug with potentially stronger side effects, that it is clearing, and that it may not interfere with the timeline to go home, or for transplant.
Fevers are still spiking, though over the number they consider fever (100) on Thursday, was yesterday only high 99’s. Gene himself has come up with a theory on what may be causing them, as the docs continue to say they do not know. Days after he went into the hospital, he was scheduled for periodontal work on some persistent pockets in his gums that do become inflamed and do need to be oral-surgically addressed, and yes, that he had procrastinated about. He said that if he flossed regularly he could keep the inflammation at bay, but he has been under strict no-flossing orders since he got admitted, as they said, flossing dislodges concentrated bacteria between your teeth. Doc A said to tell Doc B when he sees him today…..so we’ll see what they think of that theory. Even if it is correct, not sure what they could do about it.
Gene thinks his hair is thinning. No clumps, but he said there is more in the shower drain, more in his comb, more can be seen sitting on the shoulders of his dark green vest. So Manny, his nephew, who also lives here in San Diego, is coming over today to give him a very short haircut, to help ease the transition. I took a few pics last night, he actually didn’t mind, so that we could have a “before and after”. We’ve discussed the kind of hats that he thinks he wants….will need to look for them this weekend. One he described as a hat like he has seen some Muslim men wear. It is like a pillbox, or short cylinder shape, made of cloth, sometimes a narrow band along the opening. I have no idea where to find something like that. Although the “7-11 Mosque” is right here in Clairemont, only a few miles from the house, don’t think I’ll start there. I’ve been thinking about the skull-cape type of hats that the skaters, and other young people wear, and thinking that might be good to keep his head warm, but still be soft, and maybe a bit stylin’. I know the hair thing will be a difficult transition, because until now he looks exactly the same, perhaps a bit paler. And he is a hairy-headed guy! Facial hair they say possibly a few weeks after that on top of his head, so that might help smooth the way.
And then there is the heart / breathing thing. One day a few days ago he said he felt a pinch in the area that the picc line goes, basically into his heart. It actually goes into the aorta, but when we were watching the EKG, you could get a glimpse every once and awhile. He says that for the last few days when he takes a sudden deep breath, he feels “pressure”. So, yesterday they ran a clot-scanning machine. I wasn’t there for that and Gene forgot to tell me, but Patty did. So they hooked him up to a heart monitor for 24 hours. So when I got there, he had the IV line, (which he can now get unhooked from for several hours a day) and then all the heart monitor wires with the box that is the wireless transmitting unit. Made those full-body healing hugs a bit difficult. He keeps his sense of humor though, saying that he’s not telling docs anything new that happens because when he does they “do something to him”. He doesn’t mean it though. The good news is that they are monitoring him SO closely. Not sure how that will translate once he is in outpatient status.
So even though I’ve complained about no weekend, it really is the weekend, and there really is one. It means that I can take a bit of time in the morning to think, that we can visit each other during the day, instead of the last few hours of the day when we are both very tired. And some time to do some of the very few errands that Saint Patty and Saint Jim haven’t jumped in to do, only because I’ve not asked. I had a good canyon walk with Susan yesterday, convincing myself that snakes don’t like mud. Work has been easy this week, I’ll have to get a bit more deeply involved next week, taking on some of the more taxing parts. Maybe even get a walk on the beach this weekend. We’ve kept the “No-visitor” policy all week, and it has proven to be a very good thing as Gene is finding time for a short morning AND short afternoon nap, which is what the docs would like. So, I’m thinking that this weekend, while he is still at his lowest, that we’ll keep the visits on hold. I’ll give calls to the folks that we had to cancel last weekend, and maybe see if we can get you in for a short (15 min.) visits late in the afternoon, but I’ll contact you. Hopefully next week he’ll begin growing the right kind of white cells, and will have a bit more energy. He is into his second kindle book.
And your gifts and cards just keep coming! Thank you, thank you. We really want to respond to each one, but it has been overwhelming. A bit like a wedding with all the gifts for us…..from the SpEd folks, a healthy dinner delivery service….what could be more perfect? Books, movies, candy, healing icons, goodie-boxes of healthy and time-filling things, food and more food, and above all your support, wishes and prayers. Gene says he has no doubt that he’ll be back at work in August. Until then, I can’t imagine being more supported. Thank you, thank you.
Gail Moriarty
gail.moriarty@me.com
Wednesday, January 27, 2010
Update 1-27-10
Gene’s update: 1-27-10
Wait and watch: No major events to report, which is a good thing. Gene is in or near his lowest point “nadir” in terms of the job the chemo is supposed to do, and his energy levels seemed to match. He did grab an afternoon nap, you’d think the hospital would be all about napping, but I guess the good news is they are watching him very, very closely. He has had a temp since the lung procedure Sunday, last night it crossed into the range they consider a fever, I think 100.5, so they cultured his blood again. As Jim pointed out, it is interesting that even when you have no immune system, your body still tries fever to deflect the unwanted elements. No news on the potential fungus, still no results that are helpful to them, and pulmonary doc says, “we may never know”, but he is visiting every day as well.
His spirits continue to be strong, he is halfway through his first book on his Kindle, so reading more than when he had “books”, though he did get through two of those. It has been 14 days and he is looking forward to being able to go home in 14 more, though it continues to be a day-to-day situation. He is off the saline and chemo, so was actually able to shower and take one of his walks without his partner, the IV cart. A new definition of freedom.
I’ve shared with him all of your emails, and he says he wants to respond, but in the evenings when I visit it seems there is only time, and energy, to catch up on the day, go for a walk, and read a few…..but he wants to let each and every one of you how much he is buoyed by the support and the wishes. We’ll get to it….maybe on the weekend. The messages that have come through on his sdsu mail are taking a bit longer, as he had about 1000 messages backlogged and I’m trying to help him sort through those as well, without giving him anything to worry about, but the ones to my account we go through each day.
My second day back at work and donchaknow….I wasn’t in that first grade classroom for 10 minutes when I got completely sprayed by the spontaneous sneeze. It was actually kind of comical, I could literally see the spray in the air, I jumped backwards, the little girl saw me react, and then covered her mouth with her elbow! Timing IS everything! So my worst fears were realized right off the bat.
Our friend Susan (who is the owner of Breezy’s littermate/brother Cinnamon……guess that makes her a kittyaunt?) has made me commit to a twice a week therapy walk. We had our first one yesterday, and both conversationally and physically it was indeed therapeutic. Time is so valuable and short, so that is a gift, among the many we are receiving that is so deeply appreciated. But I am tired. As I said once before, there are no weekends in this process, where I get to either be lazy, or play, or just waste time, or sort and organize life. Maybe once Gene gets home…..
Tired though I may be, I would not be able to even go to work, and to carry on at the level that I am, were it not for all your support, and most especially that of Patty and Jim right now, who have swooped into my life and are holding me up on angel wings.
Jose Luis has set up a blogspot called Gene Central, and many of you have the URL. He gave me great step-by-step instructions on how to contribute to it myself (making me, I guess, an official blogger, who what have thought that part of this process). But I turn into a pumpkin at about 8 PM, so I haven’t been able to read the steps, so for right now, he is posting this for me. I’ll include the URL in my next update for those of you who don’t have it, and will continue in an email format for a bit while we change modes. Thank you Jose Luis for that…..I can only imagine how many emails you must sift through, so I’ll promise to get mine off your list by week’s end (that includes Saturday!).
We’re moving down the road to transplant, insurance has approved it, and Gene wants to be the “poster boy” for success and speedy recovery.
g
Gail Moriarty
gail.moriarty@me.com
Wait and watch: No major events to report, which is a good thing. Gene is in or near his lowest point “nadir” in terms of the job the chemo is supposed to do, and his energy levels seemed to match. He did grab an afternoon nap, you’d think the hospital would be all about napping, but I guess the good news is they are watching him very, very closely. He has had a temp since the lung procedure Sunday, last night it crossed into the range they consider a fever, I think 100.5, so they cultured his blood again. As Jim pointed out, it is interesting that even when you have no immune system, your body still tries fever to deflect the unwanted elements. No news on the potential fungus, still no results that are helpful to them, and pulmonary doc says, “we may never know”, but he is visiting every day as well.
His spirits continue to be strong, he is halfway through his first book on his Kindle, so reading more than when he had “books”, though he did get through two of those. It has been 14 days and he is looking forward to being able to go home in 14 more, though it continues to be a day-to-day situation. He is off the saline and chemo, so was actually able to shower and take one of his walks without his partner, the IV cart. A new definition of freedom.
I’ve shared with him all of your emails, and he says he wants to respond, but in the evenings when I visit it seems there is only time, and energy, to catch up on the day, go for a walk, and read a few…..but he wants to let each and every one of you how much he is buoyed by the support and the wishes. We’ll get to it….maybe on the weekend. The messages that have come through on his sdsu mail are taking a bit longer, as he had about 1000 messages backlogged and I’m trying to help him sort through those as well, without giving him anything to worry about, but the ones to my account we go through each day.
My second day back at work and donchaknow….I wasn’t in that first grade classroom for 10 minutes when I got completely sprayed by the spontaneous sneeze. It was actually kind of comical, I could literally see the spray in the air, I jumped backwards, the little girl saw me react, and then covered her mouth with her elbow! Timing IS everything! So my worst fears were realized right off the bat.
Our friend Susan (who is the owner of Breezy’s littermate/brother Cinnamon……guess that makes her a kittyaunt?) has made me commit to a twice a week therapy walk. We had our first one yesterday, and both conversationally and physically it was indeed therapeutic. Time is so valuable and short, so that is a gift, among the many we are receiving that is so deeply appreciated. But I am tired. As I said once before, there are no weekends in this process, where I get to either be lazy, or play, or just waste time, or sort and organize life. Maybe once Gene gets home…..
Tired though I may be, I would not be able to even go to work, and to carry on at the level that I am, were it not for all your support, and most especially that of Patty and Jim right now, who have swooped into my life and are holding me up on angel wings.
Jose Luis has set up a blogspot called Gene Central, and many of you have the URL. He gave me great step-by-step instructions on how to contribute to it myself (making me, I guess, an official blogger, who what have thought that part of this process). But I turn into a pumpkin at about 8 PM, so I haven’t been able to read the steps, so for right now, he is posting this for me. I’ll include the URL in my next update for those of you who don’t have it, and will continue in an email format for a bit while we change modes. Thank you Jose Luis for that…..I can only imagine how many emails you must sift through, so I’ll promise to get mine off your list by week’s end (that includes Saturday!).
We’re moving down the road to transplant, insurance has approved it, and Gene wants to be the “poster boy” for success and speedy recovery.
g
Gail Moriarty
gail.moriarty@me.com
Tuesday, January 26, 2010
Update 1-26-10
Not only is Scripps Green Hospital taking incredibly good care of our friend Gene, he also has a room with a view.
It's the #15 Hole of Torrey Pines Golf Course, Par 4.
He looks across the fairway of the 9th hole and then sees the green of the 15th hole with sand-traps on either side of it.
With the San Diego Open - PGA Tour starting this week where will be lots of sports coverage of the event. If any of you are sports fans you may catch a glimpse of Gene's window in the background:)
Gene is in room 356 in the North Wing of Scripps Green Hospital.
Click on this link to see where Gene is:
Google maps Link (hit the "previous" or back arrow button on your browser to get back to the blog)
Patty
It's the #15 Hole of Torrey Pines Golf Course, Par 4.
He looks across the fairway of the 9th hole and then sees the green of the 15th hole with sand-traps on either side of it.
With the San Diego Open - PGA Tour starting this week where will be lots of sports coverage of the event. If any of you are sports fans you may catch a glimpse of Gene's window in the background:)
Gene is in room 356 in the North Wing of Scripps Green Hospital.
Click on this link to see where Gene is:
Google maps Link (hit the "previous" or back arrow button on your browser to get back to the blog)
Patty
Update 1-25-10
Gene’s Update: 1-25-10
Looking good….that is what all the docs and nurses are saying. After yesterday’s scary adventure, he bounced right back. Had two walks, ate really well. We got out the new kindle and downloaded the first book, George Carlin’s Last Words. So that was fun. He actually got an afternoon nap in, and now that we’ve discovered HaagenDas Chocolate Cups are on the allowed list, even some food to look forward to.
Docs say all samples from the bronchoscopy are negative for fungus, but that the cultures could still turn positive, and that they may never know what it is, but are hoping the broad spectrum antifungal takes care of it. No mention of any nasty needle biopsy so that was good. Still a little temp in the 99 range, but down from yesterday.
So, I went back to work, an easy day, my immediate superior is completely supportive of whatever I need to do, and of course everyone is so kind and so supportive. And Kate, my co-worker reminded me of the Lance Armstrong story, had forgotten that one. I talked to Gene on the way to work and again at lunch so that helped. Got a little sad at the end of the day when it wasn’t a regular workaday evening, but an evening at the hospital. But Gene’s good spirits lifted me back up.
Patty and Jim are working on the exact location on the Torrey Pines Golf Course that Gene’s room looks out on, so in tomorrow’s update, she’ll have that info. Oh, and here (if I can copy the link and it works) is a really fun jibjab video from Robyn Mead, Gene looking much better than I do:
Jibjab video link
So, it must be all the incredible energy, prayers, thoughts and wishes that you are sending that got us back on the positive track so quickly, thank you, keep it up…we’re in it for the long haul, and your support is carrying us through.
g
gail.moriarty@me.com
Looking good….that is what all the docs and nurses are saying. After yesterday’s scary adventure, he bounced right back. Had two walks, ate really well. We got out the new kindle and downloaded the first book, George Carlin’s Last Words. So that was fun. He actually got an afternoon nap in, and now that we’ve discovered HaagenDas Chocolate Cups are on the allowed list, even some food to look forward to.
Docs say all samples from the bronchoscopy are negative for fungus, but that the cultures could still turn positive, and that they may never know what it is, but are hoping the broad spectrum antifungal takes care of it. No mention of any nasty needle biopsy so that was good. Still a little temp in the 99 range, but down from yesterday.
So, I went back to work, an easy day, my immediate superior is completely supportive of whatever I need to do, and of course everyone is so kind and so supportive. And Kate, my co-worker reminded me of the Lance Armstrong story, had forgotten that one. I talked to Gene on the way to work and again at lunch so that helped. Got a little sad at the end of the day when it wasn’t a regular workaday evening, but an evening at the hospital. But Gene’s good spirits lifted me back up.
Patty and Jim are working on the exact location on the Torrey Pines Golf Course that Gene’s room looks out on, so in tomorrow’s update, she’ll have that info. Oh, and here (if I can copy the link and it works) is a really fun jibjab video from Robyn Mead, Gene looking much better than I do:
Jibjab video link
So, it must be all the incredible energy, prayers, thoughts and wishes that you are sending that got us back on the positive track so quickly, thank you, keep it up…we’re in it for the long haul, and your support is carrying us through.
g
gail.moriarty@me.com
Monday, January 25, 2010
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.
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.
Sunday, January 24, 2010
Update 1-23-10
Gene’s update: 1-23-10
When the nurse went to change the dressing on his picc line ( a little uncomfortable), I asked how often they change it. When she said every week, I realized….between feeling like a month and feeling like a very long day, it has been a week since the diagnosis.
It was a week of extremely stormy weather here, as I mentioned, kind of an apt metaphor for the storms we’ve encountered in our lives. And then there are the ones associated with the earthquake in Haiti….although we both agree this is preferable to being a Haitian right now, it has been an earthquake in our lives. But the sun is out, and we are starting to find a routine, and a break in the weather is a time to gather strength for the next storm. And your emails and wonderful thoughts and prayers have been a critical part of helping us find that strength.
Gene has had a couple of great days, he looks himself, he feels strong. His only side effects are the swelling in his legs from all the saline used to wash the chemo out. He’s got it down to going to the bathroom every 80 minutes and is now adept at dragging his lines and that iv cart around with him. He has been doing 20 minute walks with Patty or I around the floor, so that is great. Docs yesterday said everything looked fine, everything looked normal. They did a cat scan of his lungs and sinuses yesterday, trying to make sure they are staying on top of infection, which for the next large chunk of time will be one of the greatest dangers. Haven’t heard the results of that yet. So we are trying to be so careful. Yesterday I freaked, he was on the phone and needed to write so he picked up the nearest pen, a bic type, and put it in his mouth to pull the cap off so he could continue writing….a harmless habit that could be so so dangerous. We’re learning. Did you know that it takes alcohol 30 minutes to kill germs? It is the friction that kills them, so all that hand sanitizer (buy stock) only works if you rub, rub, rub, a simple slather isn’t enough.
I just spoke with him this morning. He slept well ( so did I for the first time in a week!), but they are going to transfuse again this morning. His platelets are low and we noticed a kind of rash (forget the name starts with p) that is particular to leukemia caused by blood cells coming to the surface as there is no clotting. He has been eating well…none of the mouth sores they tell us to expect (and Gene always says “and maybe not….”) and they are working really hard to find food he feels okay about. Emilia made pinto beans and we followed the rules for food from home (arrive chilled only one reheating here), and we can bring in tortillas too, so that will be good soul food for him.
So as good as he looks, it is hard to believe things are as serious as they are. The social worker helped me realize that I should return to work Monday, as I only have 10 paid days, because he is in good hands, and I will be needed once he is released. We are kind of developing a routine, Emilia has been with him more in the day, and me the evenings….maybe this week it will be mornings and evenings. Yesterday evening we were able to get wireless so I shared all of your emails, we had some tears and tender time, it was good. Today is a fairly long schedule of visitors (6-7 that I know of) so I need to get over there and be gatekeeper/bouncer, as hard as that is. But I promised myself I’d take a walk during one of those times….I know I need to do that. Thanks for all your messages, cards, gifts. Team CRMSE from SDSU gave him a Kindle Reader last night, that overwhelmed him. So much love and good energy pouring in, thank you. Chemo ends tomorrow at 2:00.
gail.moriarty@me.com
When the nurse went to change the dressing on his picc line ( a little uncomfortable), I asked how often they change it. When she said every week, I realized….between feeling like a month and feeling like a very long day, it has been a week since the diagnosis.
It was a week of extremely stormy weather here, as I mentioned, kind of an apt metaphor for the storms we’ve encountered in our lives. And then there are the ones associated with the earthquake in Haiti….although we both agree this is preferable to being a Haitian right now, it has been an earthquake in our lives. But the sun is out, and we are starting to find a routine, and a break in the weather is a time to gather strength for the next storm. And your emails and wonderful thoughts and prayers have been a critical part of helping us find that strength.
Gene has had a couple of great days, he looks himself, he feels strong. His only side effects are the swelling in his legs from all the saline used to wash the chemo out. He’s got it down to going to the bathroom every 80 minutes and is now adept at dragging his lines and that iv cart around with him. He has been doing 20 minute walks with Patty or I around the floor, so that is great. Docs yesterday said everything looked fine, everything looked normal. They did a cat scan of his lungs and sinuses yesterday, trying to make sure they are staying on top of infection, which for the next large chunk of time will be one of the greatest dangers. Haven’t heard the results of that yet. So we are trying to be so careful. Yesterday I freaked, he was on the phone and needed to write so he picked up the nearest pen, a bic type, and put it in his mouth to pull the cap off so he could continue writing….a harmless habit that could be so so dangerous. We’re learning. Did you know that it takes alcohol 30 minutes to kill germs? It is the friction that kills them, so all that hand sanitizer (buy stock) only works if you rub, rub, rub, a simple slather isn’t enough.
I just spoke with him this morning. He slept well ( so did I for the first time in a week!), but they are going to transfuse again this morning. His platelets are low and we noticed a kind of rash (forget the name starts with p) that is particular to leukemia caused by blood cells coming to the surface as there is no clotting. He has been eating well…none of the mouth sores they tell us to expect (and Gene always says “and maybe not….”) and they are working really hard to find food he feels okay about. Emilia made pinto beans and we followed the rules for food from home (arrive chilled only one reheating here), and we can bring in tortillas too, so that will be good soul food for him.
So as good as he looks, it is hard to believe things are as serious as they are. The social worker helped me realize that I should return to work Monday, as I only have 10 paid days, because he is in good hands, and I will be needed once he is released. We are kind of developing a routine, Emilia has been with him more in the day, and me the evenings….maybe this week it will be mornings and evenings. Yesterday evening we were able to get wireless so I shared all of your emails, we had some tears and tender time, it was good. Today is a fairly long schedule of visitors (6-7 that I know of) so I need to get over there and be gatekeeper/bouncer, as hard as that is. But I promised myself I’d take a walk during one of those times….I know I need to do that. Thanks for all your messages, cards, gifts. Team CRMSE from SDSU gave him a Kindle Reader last night, that overwhelmed him. So much love and good energy pouring in, thank you. Chemo ends tomorrow at 2:00.
gail.moriarty@me.com
Update 1-21-10
Gene's update 1-21-10
Good news: pneumonia is smaller, they seem less worried about that. Also, we won't have to leave Scripps to do the Bone Marrow Transplant, that was misinformation we were given. Docs said yesterday that they hoped that he could get the necessary remission from this round and that we could find a donor match in one of the four sibs and that we could proceed directly to the Transplant next. That is a very rough process. I try to read but the information freaks me out. Gene only wants to know about today and tomorrow, he has said he can't really think about the long term, but he is very positive.
Yesterday when I got there he was very weak didn't look good. Then they gave him his first transfusion with a little benedryl to help him sleep. I'm not really up on all the vampire craze, if I were I'd probably have a clever metaphor but I will tell you this, he came roaring back after only half a bag! A colleague came to visit and he was up and animated. He ate well, had lots of visitors and even did his walk at 7:30 at night. He is though, starting to have the chemo effects and although he focuses on the possibilities that say he won't have the worst effects ( mouth sores, nausea, swelling, and more) they want us to know it is a possibility.
The hospital day is so crazy, so busy, practitioners in and out it seems like every 15 minutes. Taking a shower is a big event. Yesterday there were some mechanical difficulties with the iv unit because they unhooked him for a shower and the nurse got busy and it ended up clotting in the lines. They solved it but didn't need that worry.
He keeps the phone ringer off most of the time, so if you've tried to call and can't get through that is why. Gene never likes to talk on the phone under the best of circumstances, though he is grateful for the caring best wishes. So send cards and letters, he will have time to read that because they are short, and will get the messages. The wireless access is spotty and they can't seem to solve it so I've been able to share some but not all of your messages. We hardly even have time to talk to one another about non-hospital stuff. 3307 Mt. Carol Dr. San Diego CA 92111. He has lots of books and movies but so far not a long enough stretch of time to do either of those.
So many people praying thank you for providing that research documented support! Jose Luis and I are setting up a visit schedule for the SDSU folks. If you come, no germs, there is a sink in the hall right outside the door, wash your hands there and then resist the urge to shake hands although he wants to. Keep the visits 15-30 minutes. He rallies, but then is tired afterwards and they are indicating that it will be a downhill slide in his energy (and health) the next 2-3 weeks while he hopefully rebuilds his immune system. (You may want to call or text me first to see how he is feeling. I have had spotty service: 858-337-5358.) He has NO immune system now the metaphor we can handle; They factory wasn't producing, so they fired all the workers (even the good ones, the red blood cells) and we are in the process of hiring new ones, bringing in the blood transfusions for the temporary workers!
Patty and Jim are holding my hand, giving me just the right amount of space and guidance...Jim sandbagged the garage yesterday as we are having a series of major major storms.waves to 18 feet! Looks like the North Shore of Hawaii (saw pics on tv, not real life) and rain up to 6-8 inches in a week. The world inside the hospital you hardly know what is happening outside.S.we have an ocean view room and see the tents being set up on the Torrey Pines Golf Course for the tournament coming up, but you don't know what is really going on, time stands still and surges and fast forwards all at the same time. When folks ask Gene what he wants what can they get him he says, "fresh air".
I'm still a walking zombie, though I know how important it is to take care of me, it is hard. I did sleep last night thanks to Benedryl and Patty is making sure I eat. Emilia is back on duty today at the hospital, we didn't want her driving in the awful freeway storm conditions but Patty and Jim will ferry her. That will give me a bit of time to deal with my leave stuff, which may not be as flexible or generous as I'd hoped.
Send cards, letters, jokes, chuckles by snail mail and email. This will be a long haul and I'll need a long list of support providers so keep those offers warm. And keep praying, sending hopeful and positive thoughts. And thank you.
g
gail.moriarty@me.com
Good news: pneumonia is smaller, they seem less worried about that. Also, we won't have to leave Scripps to do the Bone Marrow Transplant, that was misinformation we were given. Docs said yesterday that they hoped that he could get the necessary remission from this round and that we could find a donor match in one of the four sibs and that we could proceed directly to the Transplant next. That is a very rough process. I try to read but the information freaks me out. Gene only wants to know about today and tomorrow, he has said he can't really think about the long term, but he is very positive.
Yesterday when I got there he was very weak didn't look good. Then they gave him his first transfusion with a little benedryl to help him sleep. I'm not really up on all the vampire craze, if I were I'd probably have a clever metaphor but I will tell you this, he came roaring back after only half a bag! A colleague came to visit and he was up and animated. He ate well, had lots of visitors and even did his walk at 7:30 at night. He is though, starting to have the chemo effects and although he focuses on the possibilities that say he won't have the worst effects ( mouth sores, nausea, swelling, and more) they want us to know it is a possibility.
The hospital day is so crazy, so busy, practitioners in and out it seems like every 15 minutes. Taking a shower is a big event. Yesterday there were some mechanical difficulties with the iv unit because they unhooked him for a shower and the nurse got busy and it ended up clotting in the lines. They solved it but didn't need that worry.
He keeps the phone ringer off most of the time, so if you've tried to call and can't get through that is why. Gene never likes to talk on the phone under the best of circumstances, though he is grateful for the caring best wishes. So send cards and letters, he will have time to read that because they are short, and will get the messages. The wireless access is spotty and they can't seem to solve it so I've been able to share some but not all of your messages. We hardly even have time to talk to one another about non-hospital stuff. 3307 Mt. Carol Dr. San Diego CA 92111. He has lots of books and movies but so far not a long enough stretch of time to do either of those.
So many people praying thank you for providing that research documented support! Jose Luis and I are setting up a visit schedule for the SDSU folks. If you come, no germs, there is a sink in the hall right outside the door, wash your hands there and then resist the urge to shake hands although he wants to. Keep the visits 15-30 minutes. He rallies, but then is tired afterwards and they are indicating that it will be a downhill slide in his energy (and health) the next 2-3 weeks while he hopefully rebuilds his immune system. (You may want to call or text me first to see how he is feeling. I have had spotty service: 858-337-5358.) He has NO immune system now the metaphor we can handle; They factory wasn't producing, so they fired all the workers (even the good ones, the red blood cells) and we are in the process of hiring new ones, bringing in the blood transfusions for the temporary workers!
Patty and Jim are holding my hand, giving me just the right amount of space and guidance...Jim sandbagged the garage yesterday as we are having a series of major major storms.waves to 18 feet! Looks like the North Shore of Hawaii (saw pics on tv, not real life) and rain up to 6-8 inches in a week. The world inside the hospital you hardly know what is happening outside.S.we have an ocean view room and see the tents being set up on the Torrey Pines Golf Course for the tournament coming up, but you don't know what is really going on, time stands still and surges and fast forwards all at the same time. When folks ask Gene what he wants what can they get him he says, "fresh air".
I'm still a walking zombie, though I know how important it is to take care of me, it is hard. I did sleep last night thanks to Benedryl and Patty is making sure I eat. Emilia is back on duty today at the hospital, we didn't want her driving in the awful freeway storm conditions but Patty and Jim will ferry her. That will give me a bit of time to deal with my leave stuff, which may not be as flexible or generous as I'd hoped.
Send cards, letters, jokes, chuckles by snail mail and email. This will be a long haul and I'll need a long list of support providers so keep those offers warm. And keep praying, sending hopeful and positive thoughts. And thank you.
g
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