Hi everyone:
Last night, we attended PJ's musical, Damn Yankees! We were pretty impressed; for a high school show, the production quality was exceptional, and everyone held their own onstage, including our kid. PJ played Rocky, a bigger role for him than in previous productions. I videotaped segments of the show; when I have a few spare moments, I'll try to share some photos or video. The musical runs through Saturday night at the high school.
Patty had some pretty severe nausea at the start of her day today, but she rebounded quickly and is feeling well now. Connor has a choir concert tonight, his second in as many weeks.
That's our day.
Love,
Brian
P.S. Speaking of Damn Yankees, I'm pretty happy the Sox won the game this afternoon (and two of three) against the Yankees.
Thursday, May 17, 2007
Wednesday, May 16, 2007
326 and counting...
Hi everyone:
I'm not sure that this statistic has any special significance, but Patty has now been on the transplant list for 326 days. To be honest, she seems healthier overall now than she did at the time she was first listed, so perhaps it's serendipity that things have taken longer than we had at first anticipated.
We received a call today from the organization that handles testing of Patty's blood for panel reactive antibodies (PRA.) The misplaced sample arrived at their offices in Elmhurst today, 11 days from the day it was posted. We should get some new results within the next few days.
Patty is doing pretty well today; she's dozing on the sofa as I write this.
Love,
Brian
I'm not sure that this statistic has any special significance, but Patty has now been on the transplant list for 326 days. To be honest, she seems healthier overall now than she did at the time she was first listed, so perhaps it's serendipity that things have taken longer than we had at first anticipated.
We received a call today from the organization that handles testing of Patty's blood for panel reactive antibodies (PRA.) The misplaced sample arrived at their offices in Elmhurst today, 11 days from the day it was posted. We should get some new results within the next few days.
Patty is doing pretty well today; she's dozing on the sofa as I write this.
Love,
Brian
Tuesday, May 15, 2007
A busy week
Hi everyone:Today, Patty and I met her (our) friend Kathy Smith (nee Prah) for lunch at Hugo's in Naperville. Like an idiot, I brought my camera and never once lifted it from the table; hence, no photos from our visit. We had a very enjoyable conversation with Kathy, who I found very charming and interesting. I suspect I left the impression that I was a very hungry person.
Tonight, Patty and I watched The Fountain, Darren Aronofsky's latest film. Although the movie was not well reviewed overall (50% rating on rottentomatoes.com), we gambled because I liked Aronofsky's earlier work and because I had read a few reviews that made a strong case for seeing the film. The verdict? Patty gives it a mild thumbs-down, and I give it an enthusiastic thumbs-up, with some reservations about the last 10-15 minutes of the movie. I believe I would be classified by the kids as "emo" these days, so perhaps I was inclined to have a soft spot for some of the film's themes. We'd be interested in hearing others' thoughts about this movie.
Tomorrow, we will be attending the opening night of PJ's latest play, the musical Damn Yankees! Connor has another choir concert on Thursday night. Patty has been pretty energetic and quite busy with various activities. As I write this, it is 12:23 am, and Patty is still awake and going strong. I love seeing her with a lot of energy, although this almost always seems to be a debits-and-credits kind of equation; what she takes out now isn't available to her later.
Good night.
Love,
Brian
P.S. The robin eggs in a nest in one of our trees just hatched; so far, I've seen no evidence that Patty is planning to evict them.
Monday, May 14, 2007
Another week begins
Hi everyone:
Patty seems to be doing pretty well today, and her breathlessness isn't as bad as it was last week. It's early in the day and little has happened so far, so there isn't much to share. Last night, the kids and I took Patty out for dinner to celebrate Mother's Day; we all had a wonderful, laugh-filled time. More soon...
Love,
Brian
P.S. Remember the photos I shared of the birds outside my window the other day? When I looked out the window this morning, the birds were, um...well, let's just say I'm not taking pictures. It seems spring has really sprung...
Patty seems to be doing pretty well today, and her breathlessness isn't as bad as it was last week. It's early in the day and little has happened so far, so there isn't much to share. Last night, the kids and I took Patty out for dinner to celebrate Mother's Day; we all had a wonderful, laugh-filled time. More soon...
Love,
Brian
P.S. Remember the photos I shared of the birds outside my window the other day? When I looked out the window this morning, the birds were, um...well, let's just say I'm not taking pictures. It seems spring has really sprung...
Sunday, May 13, 2007
Now playing...
Hi everyone:
For the entire time that Patty has been sick -- from the time she had her heart attack to now -- we've tried very hard to understand as much as possible about her condition. We've read first-person accounts of transplants, interviewed doctors to the point of frustration (theirs and ours, I think), exchanged emails with other heart failure patients and transplant recipients and used the Internet extensively to learn about ICDs, drugs, antibodies and many other subjects. We've watched documentaries about transplant, including one with some of Patty's doctors. And, whenever we've found a movie about heart failure or transplant, we've watched it, in the hopes we might get a feel for the human aspects of transplantation. There aren't many such films out there. We don't consider ourselves experts on heart failure or transplantation -- far from it -- but we think we now have enough high-level knowledge to appreciate a thoughtful show and to shake our heads at an odd one.
Some of you may have seen Heartsounds, with James Garner and Mary Tyler Moore. Although the film is now a bit dated in its medicine and technology, we liked it because it was (a) based on a true story, and (b) it made sense to us. For the patient and for everyone who loves the patient, heart failure is a scary-as-hell rollercoaster, and this movie demonstrated that. There are other films dealing with other conditions -- AIDs and cancer, for example -- that seem to powerfully show how devastating these life-threatening illnesses can be. Some even serve a societal purpose, I think, because they help to educate people. For example, if one less person mistreats another because a film helps them better understand that person's condition, this is a happy bonus that goes along with the entertainment.
Over the weekend, Patty and I watched A Stranger's Heart, a TV movie that we had eagerly anticipated -- not because we often look forward to TV movies, but because we had heard that this film captured the experience of heart transplantation. To be fair, we thought that this film occasionally attempted to dispense some knowledge and perhaps even tried to make the case for organ donation (albeit in a way we found far from convincing.) Overall, though, we found ourselves shaking our heads through much of this movie. Patty hasn't even had her transplant yet, and we KNOW that this isn't how it's going to go down.
Here's a 60-second synopsis of the film, as we observed it:
A woman needs a heart transplant, so at an appointed time she goes to the hospital where she joins perhaps 10 or 12 other young, slim, healthy-looking people who are all waiting around for hearts. They don't need any medicines or telemetry, just a huge bag of saline that is never less than two-thirds full; this is a good thing, because it would interfere with their ability to all dance and frolic at the New Year's Eve Party for transplant candidates (a big event, at which everyone seems very healthy and energetic.) Day or night, a patient can anticipate a visit from the same doctor, who not only keeps them up-to-date on their medical condition, but also dispenses important life advice at every turn. Every person who is awaiting a transplant can count on other heart transplant candidates to wish them well, day or night, for any procedure they may be having; in fact, even if they've had the surgery, they come back on a regular basis to check in on those still waiting. Patient privacy laws be damned -- in this hospital, everyone hears from the doctor what is going on with everyone else and, if you need an answer, you just walk in on your doctor and ask. When your friend has his transplant, the doctor asks you: "Are you ready? You're next." When you come out of surgery, you need only three leads to measure your heartbeat, and a mask to give you oxygen. Nothing in your appearance or demeanor would suggest you've just undergone major surgery and, just before you leave the hospital, you're able to run on a treadmill. Fortunately, you don't have to worry about overexerting yourself, because your fellow transplantees/friends are always there exercising with you. When you leave the hospital days after your surgery, you're as good as new, and find yourself drawn to this man who was transplanted at the same time. To your surprise, you find out that you and this man received the hearts of a couple who had been killed in a car accident -- she received hers, and he received his. Inexplicably, both you and this man find yourselves drawn to a little girl who turns out to be the daughter of the couple who had been killed. Even when the family begs for you to let them grieve, you persist in showing up at the girl's school, sending her things in the mail and such, because she thinks you're angels. Ultimately, when you fall in love and get married, the grandfather of the girl comes around and lets her attend the wedding, and then lets you become a major part of her life. As they tell you at the end, people really can live happily ever after.
Yeesh.
Love,
Brian
For the entire time that Patty has been sick -- from the time she had her heart attack to now -- we've tried very hard to understand as much as possible about her condition. We've read first-person accounts of transplants, interviewed doctors to the point of frustration (theirs and ours, I think), exchanged emails with other heart failure patients and transplant recipients and used the Internet extensively to learn about ICDs, drugs, antibodies and many other subjects. We've watched documentaries about transplant, including one with some of Patty's doctors. And, whenever we've found a movie about heart failure or transplant, we've watched it, in the hopes we might get a feel for the human aspects of transplantation. There aren't many such films out there. We don't consider ourselves experts on heart failure or transplantation -- far from it -- but we think we now have enough high-level knowledge to appreciate a thoughtful show and to shake our heads at an odd one.
Some of you may have seen Heartsounds, with James Garner and Mary Tyler Moore. Although the film is now a bit dated in its medicine and technology, we liked it because it was (a) based on a true story, and (b) it made sense to us. For the patient and for everyone who loves the patient, heart failure is a scary-as-hell rollercoaster, and this movie demonstrated that. There are other films dealing with other conditions -- AIDs and cancer, for example -- that seem to powerfully show how devastating these life-threatening illnesses can be. Some even serve a societal purpose, I think, because they help to educate people. For example, if one less person mistreats another because a film helps them better understand that person's condition, this is a happy bonus that goes along with the entertainment.
Over the weekend, Patty and I watched A Stranger's Heart, a TV movie that we had eagerly anticipated -- not because we often look forward to TV movies, but because we had heard that this film captured the experience of heart transplantation. To be fair, we thought that this film occasionally attempted to dispense some knowledge and perhaps even tried to make the case for organ donation (albeit in a way we found far from convincing.) Overall, though, we found ourselves shaking our heads through much of this movie. Patty hasn't even had her transplant yet, and we KNOW that this isn't how it's going to go down.
Here's a 60-second synopsis of the film, as we observed it:
A woman needs a heart transplant, so at an appointed time she goes to the hospital where she joins perhaps 10 or 12 other young, slim, healthy-looking people who are all waiting around for hearts. They don't need any medicines or telemetry, just a huge bag of saline that is never less than two-thirds full; this is a good thing, because it would interfere with their ability to all dance and frolic at the New Year's Eve Party for transplant candidates (a big event, at which everyone seems very healthy and energetic.) Day or night, a patient can anticipate a visit from the same doctor, who not only keeps them up-to-date on their medical condition, but also dispenses important life advice at every turn. Every person who is awaiting a transplant can count on other heart transplant candidates to wish them well, day or night, for any procedure they may be having; in fact, even if they've had the surgery, they come back on a regular basis to check in on those still waiting. Patient privacy laws be damned -- in this hospital, everyone hears from the doctor what is going on with everyone else and, if you need an answer, you just walk in on your doctor and ask. When your friend has his transplant, the doctor asks you: "Are you ready? You're next." When you come out of surgery, you need only three leads to measure your heartbeat, and a mask to give you oxygen. Nothing in your appearance or demeanor would suggest you've just undergone major surgery and, just before you leave the hospital, you're able to run on a treadmill. Fortunately, you don't have to worry about overexerting yourself, because your fellow transplantees/friends are always there exercising with you. When you leave the hospital days after your surgery, you're as good as new, and find yourself drawn to this man who was transplanted at the same time. To your surprise, you find out that you and this man received the hearts of a couple who had been killed in a car accident -- she received hers, and he received his. Inexplicably, both you and this man find yourselves drawn to a little girl who turns out to be the daughter of the couple who had been killed. Even when the family begs for you to let them grieve, you persist in showing up at the girl's school, sending her things in the mail and such, because she thinks you're angels. Ultimately, when you fall in love and get married, the grandfather of the girl comes around and lets her attend the wedding, and then lets you become a major part of her life. As they tell you at the end, people really can live happily ever after.
Yeesh.
Love,
Brian
Happy Mother's Day
Hi everyone: First, to all mothers out there, Happy Mother's Day! PJ, Kelly and Connor called earlier this morning, and plan to be home for some sort of to-be-determined Mother's Day dinner.
I'm sorry I haven't written before now, but we've been enjoying a couple of action-packed days. On Friday night, Patty and I went out for a bite to eat and for the comedy show at Walter Payton's Roundhouse in Aurora. Although the food was not as hot as we would have liked, and the comedians not quite as funny, we stayed in high spirits just because it was a rare "date night." In this photo, I believe I captured Patty mid-chew. Our waitress at the comedy club was a former student of Patty's; we seem to run into students and former students just about everywhere.
Yesterday, we traveled into Oak Park for our nephew Declan's first communion party where, even though I'm trying to lose weight, I ate like a starved person. Thank you, Kevin and Sharon. We had a nice time in the nice weather and caught up with some of Patty's siblings and their kids.
After the party, Patty returned to Oswego for some major down-time, while Neil and I headed to Comiskey, where he treated me to the Sox game. What seemed like an embarrassing loss-in-the-making instead turned into an exciting extra-innings win; based on the reaction of the crowd, including us, you would think we had won a playoff tilt. After the game, Neil and I attended the Tragically Hip concert at House of Blues (thank you, Jenn.) Originally, Patty had planned to go, but she can only do so much in a day or weekend before she runs out of steam; a concert would have been too much for her. I returned home at 2am; Patty was sleeping so soundly that it wasn't until she awakened this morning that she was aware I was home.
I'll write again later if anything of import happens.
Love,
Brian
Friday, May 11, 2007
Out my office window this afternoon
Hi everyone:For the past couple of years, I have tried to attract birds to our backyard, so that I have something to look at between elements of projects on which I'm working.
This has of course led to some misgivings in my beloved wife, who isn't a huge fan of the bird droppings all over our patio furniture. I did move most of the feeders further away, which has alleviated the problem somewhat.
This finch sock, though, is attached to my window by a suction cup. Most days, one or more finches (at least I think that's what they are) drop by for a minute or two.
There...now you REALLY know how uneventful my life is...especially since I feel compelled to photograph it.
Patty is snoozing.
Love,
Brian
Breathless in the burbs
Hi everyone:Today, our patient seems to again be in pretty good shape; she looks pretty healthy, don't you think? She had some mild nausea when she awakened, but that cleared up when she took her Zofran (you'll recall this was the drug one doctor felt would be ineffective this far removed from the treatment).
Patty's dyspnea (breathlessness) continues to be a problem, and a bit of a mystery. For some reason, this is one of the symptoms that always scares me. Also troubling when they appear are swelling of hands and feet, dizziness and arrythmias. The latter were a much greater issue before Patty's beta blocker dose was increased; if she misses a dose on any day, Patty knows that it's been missed, because she starts to feel irregular heart beats. No wonder this therapy has been shown to increase longevity after heart attacks, and thank God Patty is now tolerant enough of the drug to be able to take a dose that makes a difference.
We're kid-free this weekend (he says, observing cartwheels in his mind.) The kids are often a joy to be around, but it's nice to command your friend's undivided attention for just a couple of hours. It's amazing how much of your life you can get back in order if you can find time for a dialogue. Tonight, our plan is to go out on some sort of "date", although we haven't yet ironed out any of the details. Dinner? A flick? A comedy club? Tomorrow, if history bears out, Patty will likely be utterly spent -- so we'll have to shoot for some decent memories from tonight.
Another beautiful day out there -- the kind of day in which Jermaine Dye should break out of his hitting slump, and Patty should get some encouraging new PRA numbers. Unfortunately, J.D. doesn't seem to be ready to be imposing yet, and Patty's sample seems to have been lost in the mail. This is frustrating, because it means Patty has endured another treatment with no real sense of getting closer to her goal. It's not as though we're very optimistic from one time to the next, but we still want to know where Patty stands.
More later if there's more to share...
Love,
Brian
Thursday, May 10, 2007
Down memory lane...
Hi everyone:This morning, Patty culled her dresser of several items that she hadn't worn in some time. As she was sorting, I noticed this T-shirt, which I made for Patty for the day she returned to work after her heart attack. Those days seem a very long time ago. As I smiled again at the message on the shirt, I also reflected on how Patty has kept a good sense of humor throughout what has been a pretty tough stretch. What's the saying -- if you don't laugh, you cry?
Today, Patty feels quite a bit better than yesterday. She is still experiencing compromised breathing (which continues to make me anxious), and her fingers swelled slightly when we went for a walk; otherwise, though, she seems much more like her regular self. My hope is that these symptoms are side effects of medication (and humidity) rather than evidence of heart failure progression. I'll be very happy if we can get through this summer without a hospitalization -- unless, of course, Patty is there for a new heart.
Enjoy the amazing weather. I think I may be using the firepit in the backyard tonight.
Love,
Brian
Wednesday, May 09, 2007
Too many cooks...
Hi everyone: Our patient is having a terrible day so far.
Early Friday morning, Patty met with an oncologist who reviewed the current protocols for Patty's chemotherapy treatments, and made some changes based on his knowledge of, and experience with, the various drugs. On the surface, who could argue with this logic? After all, who better to determine what is best with cancer drugs than an oncology expert? Unfortunately, there seems to be some justification, with Patty, in leaving well enough alone.
Neither Patty nor I would ever profess to be an expert on these medicines, but there seems to be enough evidence that finding a tolerable mix of drugs for Patty is no small feat, so sometimes it's better to stay the course even if it doesn't seem ideal. Besides, I'm not sure how much data is out there about the needs of antibody-sensitized heart patients who resist nearly every "rescue" protocol to lower PRA. I sure haven't found much of relevance.
For Patty's previous infusion, nurses administered a shot of Demerol to relax her and to stave off symptoms of headache and nausea; I'm not certain there is a correlation, but this particular round of treatment was best tolerated by Patty. As well, Patty has been taking Zofran, an anti-nausea drug, on a daily basis, even though it is typically recommended only for a couple of days after infusions. As past blog entries illustrate, nobody has found a perfect solution, but it is one that Patty has found bearable. From watching my wife, I know that the difference between four days of nausea and two is a significant one, particularly as regards one's mental health.
This past Friday, the oncologist discontinued the Demerol, because he felt it couldn't help Patty for more than hours after an infusion (and Patty's nausea usually sets in a day or so post-infusion.) My understanding for why it was administered in the first place is that if you can convince your pain receptors not to register pain in the first place, you can sometimes avoid its later onset (please don't quote me on this.) The doctor also suggested that Patty take the Zofran only for the first two days after treatment, because in his estimation it could not be helping her days after treatment. Patty complied.
Patty has been pretty miserable for much of the time since her infusion. Yesterday, Patty did not have nausea, but she did have severe dyspnea; even as she sat watching Connor's concert, she found herself searching for a good breath. This morning, she vomited several times and is completely prone lest she stir things up again. At these moments, Patty again questions whether or not this course we have been following is ever going to yield the results she's hoping for. To be fair, she has moments where she feels well enough to almost forget she needs a new heart, but these days in which she's throwing up and sleeping for many of the daylight hours don't really feel like living to her. I don't fault the doctor, necessarily -- he was making suggestions based on his observations of many other patients. I think the difference here is that we're learning, more and more, that Patty's body just doesn't behave like that of "other patients."
Please keep your fingers crossed that Patty will rebound as the day progresses.
Love,
Brian
Tuesday, May 08, 2007
Connor...live in concert
Hi everyone:Tonight, we attended Connor's choir concert. Choirs from several district schools performed together at the high school. Connor sang six songs, and did very well (or at least he looked like he was doing well...it was hard to discern his voice from the hundreds of others.) His friend Noah is also pictured. Next up will be PJ's musical, Damn Yankees, which opens next Wednesday.
Patty felt very nauseous yesterday, but those symptoms seem to have cleared up. Unfortunately, she has had some real issues with breathlessness today. I'm always fairly alarmed whenever she struggles to catch a breath, because it is so reminiscent of this time last year, when Patty's condition took an abrupt and significant turn for the worse. Hopefully, as the side effects of her chemo wear off, her breathing will return to normal. Of course, because she's feeling better overall, she pushes herself a little too hard, so the breathing problems are all the more evident.
For the rest of the evening, our plan is to watch the film Music & Lyrics, which has about as much appeal for me as watching a replay of this year's Super Bowl. Oh well...
Love,
Brian
Sunday, May 06, 2007
As promised, pictures
Hi everyone:
Okay, barring an unexpected call about a transplant, I promise this will be my last posting of the night (you're welcome.) As promised, though, here are photos from the past few days:
Okay, barring an unexpected call about a transplant, I promise this will be my last posting of the night (you're welcome.) As promised, though, here are photos from the past few days:
I wanted a photo of Patty tonight, and she did not want a picture taken; we compromised
From Friday night, our visit with Jet
(from left, Chris, Alec, Brian, Connor, PJ, Nic, Cam, Kelly and Mark)
(from left, Chris, Alec, Brian, Connor, PJ, Nic, Cam, Kelly and Mark)
I asked PJ to pose with his Mom; he followed the teenage custom that requires all such requests to be treated as jokes
Patty awaiting round five of IV chemo
Feast or famine
Hi everyone:
On those nights when Patty's fatigue overcomes her earlier than usual, I often find myself drawn to this blog, because it serves as a facsimile for a late-evening conversation with friends; true, it's pretty one-sided, but that's how it goes. Those who come here for important information about Patty will be instead subjected to a flurry of messages of little import (insert joke about "and that is different how?" here.)
The funny thing is that the messages that seem to say so little end up meaning so much more when Patty and I revisit them later, because they feel like important evidence of our lives. I'm sure everyone can share stories that reinforce this point -- when you see a photo of yourself as a child, for example, you can often capture in the retelling the exact circumstances in which that photo was taken, even if many years have passed. Recent memories are also lent greater clarity when you can refresh the scene by looking at a photograph. If you scroll back to last year, you'll find a pic of Patty riding me piggyback through the halls of University of Chicago Hospital; it was such a small transgression, but the lasting feeling was of a happy rebellion at a time when Patty seemed to be getting bad news left and right.
These photos are also, then, a chance to reflect on how grateful we should be that Patty is still going as strong as she is; we are grateful, if sometimes impatient. I feel a range of emotions when I see photos in which Patty is battling pain; I feel another batch of feelings when I see pics of her dancing, laughing and interacting with the kids. I know more from observation than experience how affected a person can be when they look at a photo of a loved one who has died; the person seems both pained at the image and grateful for the preserved memory. I don't presume to really know this feeling, but I do know that I sometimes fear it.
Connor and I shared a moment tonight that started the ball rolling on these thoughts about images and memories. For context, I need to share a brief back story. Whenever the kids enjoy a concert or other special occasion, I snap pictures like a maniac and then we give the kids prints of the best snaps for them to keep in photo albums we provide for them. Connor has almost filled two albums with pictures from these events, along with a bunch of others from his infancy to today. He has pics from Thanksgiving at Mike's, and from Christmas at Kevin's, and from concerts with his siblings and with one of his best friends. He has a photo with me in which we both look much younger, I look much thinner, and he's wearing, with no shame, a Barney sweatshirt. Throughout these pages, he has many photographs of his mother, many of which include him as a subject; to date, Connor has never declined an opportunity to pose with her.
Tonight, Connor put me on notice that he will soon need a third photo album. When I lauded him on his impressive collection of photos, he shared with me, "Sometimes, when I'm in bed, I just like to flip through the pictures and remember the fun things." Patty and I know that pictures won't take away the kids' anxieties, but we both think some of the kids are deriving comfort from being able to rekindle memories of times in which fun overshadowed worry.
Sorry for spewing my armchair philosophies; try to think of this as late-night viewing, when there's just nothing worth watching. I'll get back to more important matters -- like the disappearance of the bird and eggs -- in future postings.
Love,
Brian
On those nights when Patty's fatigue overcomes her earlier than usual, I often find myself drawn to this blog, because it serves as a facsimile for a late-evening conversation with friends; true, it's pretty one-sided, but that's how it goes. Those who come here for important information about Patty will be instead subjected to a flurry of messages of little import (insert joke about "and that is different how?" here.)
The funny thing is that the messages that seem to say so little end up meaning so much more when Patty and I revisit them later, because they feel like important evidence of our lives. I'm sure everyone can share stories that reinforce this point -- when you see a photo of yourself as a child, for example, you can often capture in the retelling the exact circumstances in which that photo was taken, even if many years have passed. Recent memories are also lent greater clarity when you can refresh the scene by looking at a photograph. If you scroll back to last year, you'll find a pic of Patty riding me piggyback through the halls of University of Chicago Hospital; it was such a small transgression, but the lasting feeling was of a happy rebellion at a time when Patty seemed to be getting bad news left and right.
These photos are also, then, a chance to reflect on how grateful we should be that Patty is still going as strong as she is; we are grateful, if sometimes impatient. I feel a range of emotions when I see photos in which Patty is battling pain; I feel another batch of feelings when I see pics of her dancing, laughing and interacting with the kids. I know more from observation than experience how affected a person can be when they look at a photo of a loved one who has died; the person seems both pained at the image and grateful for the preserved memory. I don't presume to really know this feeling, but I do know that I sometimes fear it.
Connor and I shared a moment tonight that started the ball rolling on these thoughts about images and memories. For context, I need to share a brief back story. Whenever the kids enjoy a concert or other special occasion, I snap pictures like a maniac and then we give the kids prints of the best snaps for them to keep in photo albums we provide for them. Connor has almost filled two albums with pictures from these events, along with a bunch of others from his infancy to today. He has pics from Thanksgiving at Mike's, and from Christmas at Kevin's, and from concerts with his siblings and with one of his best friends. He has a photo with me in which we both look much younger, I look much thinner, and he's wearing, with no shame, a Barney sweatshirt. Throughout these pages, he has many photographs of his mother, many of which include him as a subject; to date, Connor has never declined an opportunity to pose with her.
Tonight, Connor put me on notice that he will soon need a third photo album. When I lauded him on his impressive collection of photos, he shared with me, "Sometimes, when I'm in bed, I just like to flip through the pictures and remember the fun things." Patty and I know that pictures won't take away the kids' anxieties, but we both think some of the kids are deriving comfort from being able to rekindle memories of times in which fun overshadowed worry.
Sorry for spewing my armchair philosophies; try to think of this as late-night viewing, when there's just nothing worth watching. I'll get back to more important matters -- like the disappearance of the bird and eggs -- in future postings.
Love,
Brian
I feel just sick
Hi everyone:
Inexpicably, our new tenant has disappeared. I saw the dove on the nest on my first pass by our front door this morning; by mid-afternoon, Kelly was reporting that she had not seen the bird all day. Right after Patty set our dinner on the table, I presented the mystery and pointedly asked Patty -- "Well....?" She claimed no knowledge, and I sensed she may even have been briefly offended. As quickly as the irritation appeared on her face, though, it was gone, and she allowed a gentle smile as she offered, simply, "No offense taken...now eat your quail."
Love,
Brian
Another miserable day
Hi everyone:
I promise that tomorrow I'll share photos from Friday night, and bring you up to date on anything else that has transpired (not much). Today, Patty has felt miserable from the moment she awakened until now, and isn't showing any signs of a late rebound. The extent of her activity was a move from our bedroom to the family room sofa; headache and nausea have kept her from doing much more. She really is feeling pretty crappy right now.
PJ, Kelly and I did a thorough detailing job on our truck this afternoon; in the process we removed small pieces of pretzel, french fries, broken pencils, torn-up hunks of cardboard, pine needles, pop cans, an empty Pringles container, used napkins from more than one fast food joint, safety glass (from when our car was broken into), old theater tickets, the last residual ashes from when I last smoked (November 2004) and a thoroughly dehydrated piece of gum of undetermined flavor. That was just the tip of the iceberg. It really was quite a chore, and I was grateful for the help. I would never have started, but I was nearly apoplectic from watching the first half of the Sox game and decided I needed to police myself a little better. We ended up with a clean vehicle and a Sox win, so things seem to have balanced out.
Our patient will be pulling the plug on an unpleasant day any time now. I have a bunch of work to do tomorrow, so I think I'll pull the plug as well. Thanks for staying in touch.
Love,
Brian
I promise that tomorrow I'll share photos from Friday night, and bring you up to date on anything else that has transpired (not much). Today, Patty has felt miserable from the moment she awakened until now, and isn't showing any signs of a late rebound. The extent of her activity was a move from our bedroom to the family room sofa; headache and nausea have kept her from doing much more. She really is feeling pretty crappy right now.
PJ, Kelly and I did a thorough detailing job on our truck this afternoon; in the process we removed small pieces of pretzel, french fries, broken pencils, torn-up hunks of cardboard, pine needles, pop cans, an empty Pringles container, used napkins from more than one fast food joint, safety glass (from when our car was broken into), old theater tickets, the last residual ashes from when I last smoked (November 2004) and a thoroughly dehydrated piece of gum of undetermined flavor. That was just the tip of the iceberg. It really was quite a chore, and I was grateful for the help. I would never have started, but I was nearly apoplectic from watching the first half of the Sox game and decided I needed to police myself a little better. We ended up with a clean vehicle and a Sox win, so things seem to have balanced out.
Our patient will be pulling the plug on an unpleasant day any time now. I have a bunch of work to do tomorrow, so I think I'll pull the plug as well. Thanks for staying in touch.
Love,
Brian
Saturday, May 05, 2007
As expected, Patty feels like crap
Hi everyone:
Well, as expected, Patty is feeling miserable today, following her infusion of Rituxan/Cytoxan yesterday. All day long, she has been struggling to keep her stomach down, and has had to tough out some heavy-duty headache as well. Fortunately, she was feeling somewhat better on Friday than she was on Thursday, so one round of sickness didn't build entirely upon the other. I suspect we'll be having a very low-key evening tonight, and a moderate energy day tomorrow. We shipped off another vial of blood for PRA testing; with luck, we'll have new numbers by mid-week. With some real luck, those numbers will be ones we'd like to see.
Today is Patty's brother Joe's birthday...Happy Birthday, Joe.
The kids were the guests of Jet at their concert last night; if you're not familiar with the name, you might recognize their song, "Are You Gonna Be My Girl" from the Ipod ads of last year. Connor's friend Alec came along in Patty's place, since our patient was feeling too fatigued for such an ambitious venture. The kids were treated very well by the band and its management. Thank you, guys...and thank you Sophie and Chris. Both Patty and I derive great happiness from seeing the kids (either live or in photos) with huge smiles and few cares. Everyone is exhausted today, including yours truly. I'll try to post some photos of the kids from last night when I get a chance; to be honest, I'm feeling too lazy to tackle this right now.
Keep your fingers crossed that Patty bounces back tomorrow.
Love,
Brian
Well, as expected, Patty is feeling miserable today, following her infusion of Rituxan/Cytoxan yesterday. All day long, she has been struggling to keep her stomach down, and has had to tough out some heavy-duty headache as well. Fortunately, she was feeling somewhat better on Friday than she was on Thursday, so one round of sickness didn't build entirely upon the other. I suspect we'll be having a very low-key evening tonight, and a moderate energy day tomorrow. We shipped off another vial of blood for PRA testing; with luck, we'll have new numbers by mid-week. With some real luck, those numbers will be ones we'd like to see.
Today is Patty's brother Joe's birthday...Happy Birthday, Joe.
The kids were the guests of Jet at their concert last night; if you're not familiar with the name, you might recognize their song, "Are You Gonna Be My Girl" from the Ipod ads of last year. Connor's friend Alec came along in Patty's place, since our patient was feeling too fatigued for such an ambitious venture. The kids were treated very well by the band and its management. Thank you, guys...and thank you Sophie and Chris. Both Patty and I derive great happiness from seeing the kids (either live or in photos) with huge smiles and few cares. Everyone is exhausted today, including yours truly. I'll try to post some photos of the kids from last night when I get a chance; to be honest, I'm feeling too lazy to tackle this right now.
Keep your fingers crossed that Patty bounces back tomorrow.
Love,
Brian
Thursday, May 03, 2007
Not a great day
Hi everyone:Patty has been feeling pretty miserable all day today. She was felled by a headache and nausea through the morning and afternoon, and has been even more fatigued than usual. She isn't taking a good picture today, so I decided to play with one of the photos just a little to give it some added character. I'm not sure my decision bore much fruit. She looks like a thinner, sleeping Burl Ives (the snowman version.) Silver and gold, silver and gold...
We watched the film Little Children last night. It was odd throughout, and unsettling often, but overall held together pretty nicely. Tonight, Patty is battling to stay awake (lest she not sleep later), the kids are enjoying a bonfire outside, and I'm writing on the blog.
Next up for our patient is the next round of chemo, tomorrow morning at 8:15am. Let's hope she feels just a little better before the drugs make her feel worse.
Love,
Brian
Wednesday, May 02, 2007
A road trip
Hi everyone:
Patty tagged along for a client meeting in Lake Forest this morning; she was great company for the 2.5 hours of total driving time. I find that long drives, or long walks, provide a golden opportunity to hash through any worries, issues or dreams.
Since we arrived back home early this afternoon, I have been doing marketing and Patty has been alternating between her new book (If I Am Missing or Dead) and her favorite show (Law & Order.) Patty is having yet another pretty good day; unfortunately, she has another round of chemo this coming Friday, which means she will probably feel like crap again for a few days.
If there's anything else to share from our day, I'll write again; otherwise, I won't subject you to THIS again (until tomorrow.)
Love,
Brian
Patty tagged along for a client meeting in Lake Forest this morning; she was great company for the 2.5 hours of total driving time. I find that long drives, or long walks, provide a golden opportunity to hash through any worries, issues or dreams.
Since we arrived back home early this afternoon, I have been doing marketing and Patty has been alternating between her new book (If I Am Missing or Dead) and her favorite show (Law & Order.) Patty is having yet another pretty good day; unfortunately, she has another round of chemo this coming Friday, which means she will probably feel like crap again for a few days.
If there's anything else to share from our day, I'll write again; otherwise, I won't subject you to THIS again (until tomorrow.)
Love,
Brian
Tuesday, May 01, 2007
The most boring blog entry ever
Hi everyone:The absolute nadir of info sharing has been reached when the most exciting news we have to report is that a mourning dove has nested in one of our hanging plants. The kids and I were thrilled; Patty, ever the lover of backyard wildlife, simply said, "Shit...how do we get rid of it?"
Patty is doing well. The bird seems fine. We're not letting Patty out of our sight.
Love,
Brian
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