A-fib findings

Hi everyone:

As I was logging on tonight, I noticed that this is the 454th entry in this blog since we started it last year. Wow. Thanks for sticking around.

Patty sent in an interrogation of her ICD this afternoon. She has a small (and pretty cool) device here at home that communicates with her ICD and then transmits this information to the techs at Edward Hospital. The hospital can then immediately tell Patty if there are any anomalies; unfortunately, some irregularities did show up. Apparently, on several occasions, Patty has been experiencing prolonged atrial fibrillations, some lasting up to 28 minutes. My understanding is that "a-fib" incidents involve inconsistency in pace between the upper and lower parts of the heart. Although most people are asymptomatic, doctors take atrial fibrillations fairly seriously, especially in patients with heart failure. Sometimes, the irregularity in heart rhythms leads to clotting, which can result in stroke. Needless to say, Patty would prefer to avoid a stroke. She may be put back on Coumadin, a blood thinning medicine, to reduce the risk of dangerous clots.

Tomorrow, Patty has another round of chemotherapy scheduled. We haven't been able to connect with her doctors to question the value of continuing this treatment, so she's just going to go ahead and endure another round. I guess we'll plan on a lower-key weekend.

Love,
Brian

Working girl

Hi everyone:

Life has been relatively uneventful around here over the past couple of days. Patty dropped in at her school yesterday for a meeting with a colleague and, as pictured, is on the computer working on plans for a part-time return to work in the fall. I can tell she's getting excited, and I'm excited for her, but I have noticed that her enthusiasm exascerbates my worry. I don't want Patty taking on too much, too quickly, as is her wont. I'm hoping that Patty's colleagues and students will help slow her down from time to time.

As I have mentioned several times lately, Patty seems pretty healthy right now; most people who see her comment on how great she looks. I think all of her doctors would agree that she's done better than most in living with heart failure and autoimmune disease. We both know that she could have a sudden downturn at any time, but for now we're enjoying the fact that she has kept herself going so strong. She is taking daily walks to improve her stamina, seems to be breathing fairly well even in the heat and humidity, and just seems to be more a part of every day around here. Let's keep this positive streak going so that when the heart finally does come, Patty will be quick and strong in recovery.

Love,
Brian

Bad news, slow in coming

Hi everyone:

We received the long-overdue PRA results today (these of the misplaced sample.) Unfortunately, there has been no change in Patty's numbers, which suggests that the Rituxan and Cytoxan therapies have been ineffective, at least in a statistical sense. Patty has asked her doctors to consider other options, or to at least think about discontinuing this course of action. She may ultimately follow their wishes, but both Patty and I believe we should challenge the status quo from time to time. After all, Patty is the customer.

Of course, the doctors will want Patty to persevere, because we think they see the perfect match that Patty almost received to be some sort of portent of good things to come, and an indication that they are making progress in knocking back the antibodies. I hope they're right. At those times in which our sky seems to be falling, I worry that the "perfect" heart was a once-in-a-thousand chance that may be long in returning. There is another part of me, though, that knows that this story simply must have a happy ending -- and that the rest of this is just part of the drama.

Patty is having a pretty good day today. She's been a machine, tackling laundry and some other cleaning tasks that I of course would never have realized were in need of attention. We are going for a walk in just a moment, and Kathleen is stopping by, so I'll sign off. More soon...

Love,
Brian

Movie night

Hi everyone:

Patty and I originally planned to enjoy a quiet evening at home, but instead opted to take in a movie at Cantera 30. We saw Away From Her, a Canadian film about a marriage forever altered by the wife's descent into Altzheimer's. Although I thought the film felt slightly forced at points, and Patty felt it was a few minutes too long, we both came away feeling it was well worth the few bucks for tickets (and for popcorn, of course.) Some of the dialogue was quite thought-provoking, and sensitive moments were presented without being too maudlin; this was a pleasant departure from the many, many flicks that are either stupid or saccharin.

On the days when there isn't much going on I fill the space with mini-reviews of movies or observations about the Sox (sigh), or I just tell you about one or two things that were part of Patty's day. I realize that this information can't be that compelling, and that it doesn't stick to the overall theme of the blog, but I am glad to be able to talk about our life, including those aspects that are in no way medical, and we derive comfort from knowing you are checking in. Thank you.

We have been kid-free for much of the weekend. PJ's final performance of Damn Yankees! was tonight; we haven't heard details, but we presume it went fine. Kelly is away with her Uncle Joe and cousin Caleigh at a waterpark hotel. And Connor called me late in the Sox game today and asked, "Hey Dad...how are you holding up?" As distraught as I was about the game, I mostly cheered up after Connor's call.

Patty is in bed; for her, this was an ambitious day. She really seems to be doing pretty well these days, knock on wood. I hope she receives a heart soon, while her body is strong enough to bounce back quickly after the surgery. Enough for tonight...more tomorrow.

Love,
Brian

Lots of nothing

Hi everyone:

There's not much happening with us today. We went out for a low-key lunch and did some window shopping at the Outlet Mall in Aurora. Now, Patty is settling in for a nap and I'm going to watch the Sox/Cubs game; hopefully, the outcome will be better today. If anything else transpires, I'll be sure to write.

Love,
Brian

Yankees everywhere

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.

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

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.

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...

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

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

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

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

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

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

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:

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)

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

Seriously, though...

...what happened to our freakin' bird?

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

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

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

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

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

Prom Night

Hi everyone:

PJ attended his first prom last night, at the Roundhouse in Aurora. He and Kelsey were, of course, subjected to the requisite photo op before leaving for the night. Patty and I were both coming at them with cameras; the photo to the right was taken by our patient. Patty gushed to the extent that at one point I believe she was on the verge of squealing; she will deny this, of course, but I have witnesses. She was a Mom pretty impressed with the look of her kid (and his date, of course.)

Last night, we cooked burgers on the firepit and then joined Connor and Kelly outside to watch the fire while they roasted marshmallows. It ended up being like a family night with reduced membership.

Today, Patty seems to be retaining some fluid, as evidenced by slight swelling of her feet and hands. Although this is a common heart failure symptom, it has rarely been an issue for Patty. In fact, Patty is often so "dry" (the doctors' term) that she has been encouraged to eat more sodium-rich foods. Perhaps not today, though.

I plan to work on client work today, while Patty and Kelly are watching Sophie's Choice. PJ has gone off for breakfast with his friends, and Connor is outside. And I'm pretty certain the Sox are going to prevail in the rubber match against the Angels; otherwise, the balance between good and evil in the world (also known as the American League) will be out of whack.

More pics below...

Love,

Brian

A night out

Hi everyone:

With varying degrees of success, as you can see, we tried to jam our family (sans Devin & Colin) into a photo booth at the mall tonight. Childish? But of course. Pointless? Most certainly. Fun? Well, it seemed that way at the time, although it wasn't easy for us to extract our old bones from the booth. As you can see, Patty found a way to laugh even as she was being compressed into a smaller and smaller space. Kelly was none too comfortable when Patty yanked her head, by the ear, into the final frame.

We saw Hot Fuzz tonight. I thought for sure it would be very enjoyable, because the film has been very well reviewed, and both Patty and I liked Shaun of the Dead (by the same director.) Unfortunately, both Patty and I were disappointed with the movie; in fact, Patty never once laughed. The kids liked the flick, though, so it wasn't a total bust.

Now, we are settling into some television, while both Kelly and Connor entertain sleepover guests. Patty has been doing pretty well again today. Next Friday, she'll settle into another round of chemo, and the good days will go back on hold for a while.

Love,
Brian

Zzzz....

A decent stretch

Hi everyone:

Patty is feeling pretty well today (after a solid night of sleep), and has ambitions to prepare a nice dinner for the family tonight. I'm really liking how healthy she has looked when I've been snapping recent pictures; for the longest time, she seemed so gaunt and pale, and I would need to snap many photos before finding one I thought was a good one. Today, I've taken only one photo -- the one to the left. I think Patty looks great. She has had a pretty good streak of days over the last little while; I hope she can keep it going.

Patty has hosted high school students in our home twice this week to help them photograph their art portfolios. I think she's enjoyed the visits, which make her feel like she's working again, albeit in a reduced role. I am worried about her return to work, but also know that it means a great deal to her. Finally, she may be able to realize her dream of teaching her own kids. And to those of you who either work with Patty or are taught by her, I'm asking you to make sure she doesn't overdo things, as is her wont.

Last night, I posted copies of the past several days' blog entries on the bulletin board at Kicker's; one of the bartenders encouraged me to do so, as this has helped acquaintances keep up with Patty's progress. A friend of ours, Chuck, asked if I was sharing good news; I said that, for all intents and purposes, I was really posting NO news. I admitted that I'm actually a bit embarrassed about how uneventful our lives seem, at times, especially since we've put a part of them on public display. We agreed that a boring blog entry was better than sharing bad news, even if it doesn't make for spicy reading.

Exciting times ahead...


Love,
Brian

Nothing to report

Hi everyone:

It's late on Wednesday night, and there's really very little to report. Patty did not sleep well last night -- in fact, she didn't fall asleep until 8am -- so she slept a bunch late in the day and called it a night early. How's that for a compelling report of a day's activities? I'll catch you up on things tomorrow, if there's anything new to report.

Love,
Brian

A pinker Patty & Patrick's performance

Hi everyone:

Patty visited Dr. Costanzo this afternoon. As this was only a routine appointment, little of import emerged. The doctor said that Patty's heart and lungs continue to be compensating well, and that she thought Patty was looking especially healthy. To be honest, I also think she has appeared healthier in the last week or so; I'm not sure what this means, medically, but it's nice to see her looking, for lack of a better word, "pinker."

Whenever we get such glowing reports, we find ourselves loosely pondering a question we probably shouldn't be pondering -- that is, if Patty is doing so well, why does she need a new heart right now? Wouldn't it be better to wait until her physical condition makes a transplant a truly urgent need? Of course, when we invest real thought in the matter, we know that many of the negative changes in the past have been fairly sudden, and that a damaged heart always carries with it a real degree of risk, so we have to keep our eyes on the prize. Besides, I would much prefer to see Patty go into a major operation feeling strong than find ourselves in a situation where Patty desperately needs a heart and an appropriate organ can't be found.

After the appointment, Patty took a prescription to be filled, only to find that the date on the prescription was incorrect. She needed the meds, so she had to drive all the way back to the hospital, and then back to the pharmacy. She put in a fair amount of driving time today.

PJ has been practicing daily for his role in his school's production of Damn Yankees! A key cast member recently pulled out of the play, so PJ was promoted to the role of Rocky, one of the two lead ball players. He will sing solo at a number of points during the production. We will, of course, be checking out the show. Damn Yankees! will be performed on May 16, 17, 18 and 19 at the Performing Arts Center in PJ's school. If, by chance, you plan on attending, please let us know so that perhaps we can see the show together.

Please keep Patty's brother Kevin and his wife Sharon in your thoughts and prayers; they have both been feeling grim for several days, and could really use a change in fortune.

Love,
Brian

More blues...

Hi everyone:

We just received a call from UCH with the latest PRA numbers; in spite of the fun I try to inject into presenting these numbers each time, the results aren't doing much to lift our spirits:

Given that there's often a margin for differences between one set of test samples and the next, these suggest there's been no improvement since the last round of treatment. The donor heart that Patty didn't get -- the one that was a perfect match for her -- is looming rather large to us right now. Please keep your fingers crossed that another negative crossmatch is on the near horizon.

Sigh...

Love,

Brian

Blue morning, blue day

Hi everyone:

Patty is being troubled by an upset stomach this morning, which is in turn affecting her ability to sleep, so she's pretty fatigued as I write this. She awakened at 5:30, and has been awake ever since. She's relaxing on the sofa while I continue work on a client project and on some marketing (in pursuit of more client projects.) Fortunately, she's enough removed from her chemo treatment that headache and nausea are pretty much a memory.

I'm not sure if this means anything at all, but one of Patty's heels was hurting yesterday and is completely numb today. Of course, everyone has aches and pains from time to time, so this could be nothing at all, but every unusual symptom in Patty stimulates at least a little worry for us.

Last night, we watched Last King of Scotland. We were impressed by Forest Whitaker's performance, and thought the movie was good, but again felt the overall experience fell short of the hype. This seems to be the case with many of the flicks we watch these days. Perhaps the best movie we've seen in a while is a French Canadian indie film called C.R.A.Z.Y., which was in many ways like a much more dysfunctional and adult version of A Christmas Story.

In spite of the nice weather, last evening and today have been somewhat blue days around our house. Sometimes, the worries and fears about everything seem larger than life, and moments of panic set in. So, for example, a malfunctioning lawnmower seems like the product of a conspiracy by household objects. The inability to upload a document seems like a major failing of our computer and of the Internet. And a "scurrying" sound from one of our walls seems like it just has to be wildlife. This is the environment in which "what would we do if..." questions, all with unpleasant answers, seem to take hold. We try very hard not to indulge these blue moments, but sometimes they become the uninvited guests it takes forever to send packing.

Okay, enough of that. We are still waiting on the latest PRA numbers; I'll share these when we receive them. Patty has a routine appointment with Dr. Costanzo tomorrow; I'll let you know if anything new and interesting emerges from that discussion. And that's our story for right now...

Love,
Brian

A busy weekend

Hi everyone:

We've been having a fun, busy weekend. Aunt Sue has stayed with us since Friday evening, and is returning to Milwaukee later this morning. After we picked Sue up at the Route 59 Metra station, she treated us to dinner at Francesca's Passagio. While there, we ran into Mark Goodwin, one of Patty's cardiologists from Edward Hospital; I would say, "Small world," except that Patty has enough doctors now that it would be a surprise if we didn't run into one every so often.

Yesterday, Kathleen came over for a visit, and then Luke and Nora dropped in on their way back from camping at Starved Rock; they stayed for lunch with us while I fretted about the late innings of the White Sox game. Nora is such a sweetheart (no offense, Luke.) In the late afternoon and evening, we sat around our fire pit, and then used the pit to grill some steaks (which always taste amazing when grilled over wood.)

Today, we are dropping Sue back at the Metra station, and then Patty is going to a small birthday bash for MaryBeth, who is 50!!!!! (shh...)

If anything else of note happens today, I'll write again. Enjoy the weather.

Love,

Brian

From Friday afternoon

Share-a-caption contest

The best caption for the following picture will win either an autographed photograph of Patty's current heart after it is removed from her body, or a fast food meal for one:



Here's mine:

With calm, deliberate resolve, PJ demonstrated that anyone could blow their own brains out

The blues (good ones)

Hi everyone:

Today has been a pretty low-key day around our home, which is usually the case for our patient on the day after a night out (more on that shortly.) Health-wise, Patty hasn't been great, but then she hasn't been terrible, either; she seldom fares much better than this. Patty has been fine-tuning the cleanliness of our house before Aunt Sue visits in a few hours; other than that, she's been recharging her batteries from yesterday.

Last night, Patty, the kids and I were treated to dinner at Pizza Capri by Neil, and then treated to free tickets to Blue Man Group. That was a fun, amazing show which was at times puzzling ("How did they do that?") and at others absolutely hilarious (you'll never look at Cap'n Crunch the same way again.) As much as I loved the show, though, I derived even greater pleasure from hearing Patty's endless gales of laughter.

It seems that each new experience we have been able to arrange for the kids becomes Connor's "new favorite;" for some reason, I find this incredibly endearing. What's more, it suggests that, with a lot of help from a lot of people, have been able to provide some successful distractions and good memories during a tough time. However, as I mentioned to Patty last night, I missed Devin and Colin deeply, because it only ever really feels like a complete family when we're all together.

After we arrived home last night, Patty and I watched the show "Transplant!" on Discovery Health. I believe it airs again on Saturday or Sunday, if you're interested. On this particular episode, a 61-year-old woman awaiting a heart transplant is being held back from a future by unusually high antibodies. Does this sound at all familiar? What we found a bit queer about the episode was the extent to which they presented plasmapheresis as an arduous, risky, hail-mary kind of treatment, when for Patty this was just another of the many unsuccessful methods of trying to reduce antibodies.

Love,
Brian

In the lobby after the show (PJ is the photographer)

On the run...

Hi everyone:

I was too busy to write yesterday, and I don't have much time now, but I did want to let everyone know that Patty had a pretty decent day yesterday, but is feeling somewhat nauseous today. I'll write again with details later; I'm on my way to a meeting, so I need to sign off for now.

Love,
Brian

P.S. Mark Buerhle...wow.

Still ailing (but less so)

Hi everyone:

There's not much to report from our home today. Patty is still feeling less than perfect, although she seems to improve a little each day. I feel unsettled when, from time to time, Patty seems unusually breathless or suddenly light-headed from some minor exertion, but I think it's more drug-related than heart-related.

I'm hoping that by tomorrow we'll start seeing more of the real Patty. She has been fairly miserable over the past few days. Thankfully, her headache seems to have disappeared, leaving in its place just some general malaise. I will be so grateful when Patty, Rituxan and Cytoxan can part company; the latter two haven't been kind friends.

Happy Birthday, MaryBeth...and the same in advance to Peter (and belatedly to Mike, whose birthday was last week.) Patty has so many extended family members that I haven't even started to remember their birthdays; had I not heard these mentioned today, I wouldn't have had a clue. Anyway, Happy Birthday(s).

Tonight, our plan is to take in some of the Sox game and perhaps watch a DVD (either Last King of Scotland or Notes on a Scandal.) The excitement never wanes...

Love,
Brian

Happy Birthday to Bev...and thanks to Kevin

Hi everyone:

Happy Birthday, Mom (I think it's her 45th.)

Patty is again feeling under the weather today, although she thinks she is doing better overall than after previous infusions of Cytoxan/Rituxan. She has been struggling with headaches and mild nausea, along with fatigue. She has been taking a nice long nap this afternoon. Earlier, she had a conversation with her transplant coordinator, who has some ideas about how they might make Patty more visible if and when donor hearts become available; we've been asked not to discuss specifics at this time, so that's all I can share for now.

Devin and I spoke last night. He has applied for a program that would see him divide his time between a college program, an apprenticeship at a restaurant and his regular high school classes. Our understanding is that his career goal is to become a chef. We like dining out, so we're all for this aspiration. The other kids are also doing well. PJ is preparing for a role in his school's production of Damn Yankees, and also making plans for his first prom.

Our kitchen faucet broke in Connor's hand yesterday, so I made a mad dash to Home Depot before they closed last night. Our good friend Kevin installed the replacement faucet for us today, since I have almost no handyman skills; he has helped us many times before when things have broken. Thanks, Kevin. We seem to have had an inordinate number of product failures in recent months -- our car, our fridge, our kitchen faucet -- which is more than a little frustrating. Thankfully, our friends have saved us from big-ticket expenses at such times.

Cheers,
Brian

The post-infusion blahs

Hi everyone:

Happy Anniversary, Mom & Dad (I think it's their 45th.)

As I write this, the White Sox have gone 18 innings without scoring a run; in the same stretch, they have allowed six runs (one from a bases-loaded walk) and committed four errors. During today's game, Patty has started to refer to me as "the crabby husband," because I treat each miscue by the Sox as a personal affront. It's probably a good thing I'm not a sports reporter, because one inning I'm presenting the team as the personification of excellence, and the next they're the worst team that has ever graced this earth. Hey -- the Sox just scored a run -- things are looking up!!!

Patty is feeling weak and shaky today, and is battling a headache and shortness of breath. She is also feeling some nausea. I suspect her blood pressure is a little low, as was the case the last time she underwent a Rituxan/Cytoxan infusion. Most times, when Patty feels unusually weak, blood pressure is a factor. Our patient is relaxing on the sofa, and would probably sleep if I would stop yelling at the television. By Tuesday or Wednesday, we should receive Patty's latest PRA numbers.

If anything else of consequence happens, I'll write again. Otherwise, I'll be back with you tomorrow.

Love,
Brian

P.S. Bob Rohrman commercials -- especially the most recent one, with Angie O'Plasty -- suck away our will to live.

This time, a great kids' night

Hi everyone:

Before I describe the picture above, let me first talk about Patty's day. She was at Edward Hospital by 8:30 am to start another round of Rituxan/Cytoxan. I have to say that I admire Patty's resilience in going back time and again, in spite of her misgivings. In an attempt to stave off headaches after the infusion, her doctors ordered a shot of Demerol before the process began. Within moments of the injection, Patty had a "foggy" look on her face, analogous to how Jack Nicholson was presented in the later scenes of Cuckoo's Nest. I took several pictures, which provided me endless moments of mirth; unfortunately, Patty exercised her content veto, so you can't see the pics...unless, of course, I won't get caught showing you. They are HILARIOUS!!! Today, Patty had early nausea, and has been very tired, but is otherwise faring pretty well.

Okay, back to the picture. Last night, PJ, Kelly and Connor, along with Kelly's good friend Allison (a replacement for Patty, who just couldn't muster the energy for two consecutive nights out), were the guests of the British band Placebo and their management at their House of Blues concert. After the amazing, high-energy show, Steve Hewitt, the band's drummer, gave me a set of signed drumsticks to give to Patty (and, pointing to the kids, said, "And don't give them to this lot.") Patty was quite happy to receive these when we arrived home in the wee hours. Kelly was hoping that Patty would break up the set and share the wealth; in this case, no dice. Steve was a great guy.

Stefan Olsdal, the lead guitarist, proved to be incredibly down-to-earth, warm and charming; for several minutes, he sat on the floor between Kelly and Allison and carried on a quiet conversation about the kids' summer. He did this even though he had friends and family members patiently waiting for more of his time. He was generous about signing autographs and taking pictures, and wished Patty the best several times. Thank you, Stefan.

Kelly was very disappointed that Brian Molko, the lead singer, could not join us because he was feeling flu-like symptoms; I believe what I heard was, "Oh, but he's soooooo HOT!!!" I can't comment on his relative temperature, but I will say that they put on a very good show. Before we left, Stefan encouraged us to contact them again during their next visit to Chicago, when perhaps Patty and the singer Brian would both be feeling better and could say hello. I think he was entirely sincere.

Today, I am belatedly taking Kelly to purchase a birthday present, and hoping for some late-inning heroics from the Sox, who currently trail Cleveland 2-0 in the sixth inning. PJ is visiting his girlfriend Kelsey, and Connor is playing with friends outside. Patty is sound asleep on the sofa. That's our day so far...

Love,
Brian

P.S. Alex -- thank you so much for everything.

A great family night

Hi everyone:

Tonight, Patty, the three kids and I attended a performance of Riverdance, at the Auditorium Theatre. We were the guests of Jesse, the company manager -- thank you, Jesse, for the wonderful seats. Everyone had a great time; surprisingly, Connor was most effusive in his praise. He said that of all the special events we've enjoyed, this was his personal favorite.

There truly are few things more heartwarming than seeing your wife and kids looking completely happy, as though they were entirely free of any worries. The kids were thrilled that Patty was able to be a part of things, as was I, especially since Patty was energetic and enthusiastic. At one point, I heard Patty's feet doing some Irish dancing under her chair. The only thing that would have improved the night would have been if Devin and Colin could have come along; we miss them a lot.

Patty is scheduled for yet another round of Rituxan/Cytoxan tomorrow, starting at 8:30 am. Dr. Costanzo has tweaked the pre-medication regimen for this round, in the hopes Patty may be able to avoid some of the nausea and headache that has accompanied previous infusions. Keep your fingers crossed.

Patty had a nice, long conversation with her boss today. Patty is really missing the interaction with students, and with other work colleagues, and is hoping to return for the start of the next school year. Her doctors agree that this should be a good thing for her, both mentally and physically, provided she doesn't overdo things. The school is trying to accommodate a part-time schedule for Patty, for which she is very grateful; we had been worried that a full-time role would be too taxing on her, at least for now. All of these plans may be moot if Patty gets a new heart in the summer, but it does give her a goal to shoot for. I still have some mixed feelings about all of this, but I know it's important to her, and I trust her judgement, so we'll see what happens.

It's getting late, and I want to unwind with Patty for a while, so I'll sign off. More soon...

Love,

Brian

At the Auditorium Theatre (a beautiful venue)

Up next: Irish dancing

Hi everyone:

Patty had a bit of a rough morning, with some uncomfortable stomach cramping and nausea, but seems to have come around through the afternoon. She's enthusiastically preparing a roast pork dinner for the kids.

The kids had an abbreviated school day today, and have another tomorrow. We are all heading downtown tomorrow for Riverdance, for which Patty was given tickets by the show's producers. Patty has always wanted to see the show, so she is very excited. Some of you may not know that Patty learned Irish dancing as a child, and can, on rare occasions, be convinced to try a step or two. She's still pretty good.

On Friday, Patty will undergo yet another round of Rituxan/Cytoxan, and will ship another vial of blood for PRA testing. Now that we've had a close call, though, we're not sure how much importance to attach to these numbers. Hopefully, there's something in this drug regimen that is making a difference, even if on the surface the numbers don't seem encouraging.

Love,
Brian

A good one

Hi everyone:

Up to this moment, today has been relatively uneventful. Patty is doing well, and was productive -- all the laundry for our home is washed and folded. On those days in which Patty can accomplish the tasks she had hoped for, her spirits get a boost; on those days when her hopes go out the window amid waves of sickness, her spirits seem to flag. Patty plans to make a traditional meat-and-potatoes dinner for the kids this evening. And that's it, really. How's that for a cliffhanger?

Love,
Brian

Coming soon?

Hi everyone:

Since Patty's medical history seems to me, at times, like the stuff of outlandish fiction, I thought today might be a good day to start thinking about the movie version of all of this -- hence, the draft poster to the right. What do you think? To be honest, I wasn't getting good photos of Patty today, so I opted to have some fun with an extreme close-up (just to mix things up a little.)

We did hear today a piece of information that was at once interesting, unsettling and encouraging. Patty spoke with her transplant coordinator, who confirmed that the heart donated over the weekend was a negative crossmatch for Patty, in both classes of antibodies. So, in spite of the 58% and 100% figures, they had found a heart that would work. Unfortunately, there was a person on the list ahead of Patty who was considered a higher priority, so the heart went to him or her.

So, how do we feel about all this? Well, we were a bit disappointed to hear that after all this time, a real cause for hope came along and suddenly took a detour. Of course, there is someone else out there who is loved by others who received a second chance, so we have to appreciate that. It's hard to hear that she came so close without success, but we are now seeing a silver lining here. One of Patty's doctors said that she is very encouraged by this news, because it may mean that the PRA numbers are meaningful but by no means absolute. I will tell you this: Patty has been feeling very hopeful and cheerful since she received that call -- and that is, bar none, the best thing about this day.

Love,
Brian

Happy (Easter) Birthday to Kelly

Hi everyone:

Happy Easter...and Happy Birthday, Kelly!

Above is today's example of rogue ambush birthday morning photography. Kelly is 14 today and, as you can see, she slept in. Her friend Allison slept over, so I suspect she did not get to sleep until the wee hours.

Yesterday came in with a bang and went out with a whimper. When we received the call in the morning about a possible heart for Patty, I immediately fell into what we have now dubbed "pinball mode." Without really being conscious of what I'm doing, I pace from room to room, thinking I'm looking for something, and then change direction repeatedly when I encounter walls or other objects. I am agitated, confused and overwhelmed all at once. You know how in movies the husband reacts when the wife starts into labor? It's very much like that. It's embarrassing, really. I don't know how well I'll really function if and when a viable heart becomes available. Patty, of course, remains relatively calm through all of this; only the slight shakiness in her hands betrays her nervousness.

Patty and Kelly drove into Oak Park for Nicole's bridal shower yesterday. They had a good time, although Patty had to wait until well into the party before she could eat. The nurse on Patty's transplant team had said that Patty could not have anything in her stomach in case she needed to go into surgery. As soon as I called Patty to tell her the heart wasn't for her, she said, "Well, that's too bad; can I go now, so I can get something to eat?" Later, when we had a chance to chat about the day, Patty said that, on one level, she was glad she didn't get the transplant, because she is generally doing well enough these days that major surgery seemed like it might be borrowing trouble. I see her point, but I still want her to get a heart before it becomes a truly emergent situation. I suspect she was cloaking some degree of disappointment with a positive outlook; she's like that.

Today, we are planning a birthday brunch for Kelly -- just the five of us. We're getting a bit of a late start, though, because Patty is feeling nauseous and fatigued this morning. I offered to facilitate the food prep in her absence, but she really wants to participate, so we'll just postpone things for a while. Have a great Easter, everyone.

Love,
Brian

Much ado about nothing

Hi everyone:

Well, it turns out that all the hoopla was for nothing. Patty did not get this heart. Perhaps next time...

Love,
Brian

Waiting...

Hi everyone:

This waiting is nerve-wracking. Patty and Kelly have gone to Nicole's shower, while I stay back with the boys for the "yay or nay" call. Both Patty and I are inclined to believe nothing will come of this, but the possibility is exciting, after so much waiting for something that seemed like good news.

Love,
Brian

A heart?

Hi everyone:

I can't write much right now, because I'm completely rattled, but here it is: Patty is on stand-by for a heart. Our understanding is that it has been offered to another candidate, so Patty's chances are somewhat slim, but she has to be prepared in case it happens -- no snacks for her at Nicole's bridal shower today. That's all we know for now. I presume, from this, that Patty might be a good candidate from the antibodies perspective, so it would be a shame if it didn't come through. I will try to provide updates as soon as we have more info. Please keep your fingers crossed.

Love,
Brian

Vomit, food, work & silence

Hi everyone:

Patty has been doing pretty well again today, which makes me all the more anxious that a new round of Rituxan/Cytoxan is approaching (a week from tomorrow.) It seems insane, at times, that just as Patty is feeling better than usual she voluntarily accepts drugs that make her sick to her stomach. I think it's time for these drugs to start doing what they're supposed to do.

Tonight, we are cooking a pasta dinner and Kelly is having a sleepover. We are going to watch a movie with the kids, as a nod toward getting our family fun night resurrected; we've been trying to plan these, but the rest of life keeps throwing up obstacles.

Patty and I chatted again today about her plans for the next school year. Her hope, if her stamina improves, is to try to return to work in September. We both know that this is an ambitious target, particularly if she has a full day, but it's important to her to try. I'll be supportive as long as it doesn't seem she's making a choice that is detrimental to her health.

That's our story; what's new with everyone? Patty still checks every day for comments, and wishes it wasn't so quiet in here. Of course, we haven't been providing much in the way of comment-worthy content, so I guess I shouldn't comment. Just the same, please say hello whenever you can spare a moment.

Cheers,

Brian

P.S. Sox win!!! (whew...)

Thoughts for Kathleen

Hi everyone:

Patty awakened at 5:15 with stomach pain, dozed off again at around 9am, and then didn't emerge from her slumber until after noon (without the stomach issues, thankfully.) In spite of her late start, she is still feeling tired as I write this. I've been keeping busy with client work today, so I've only been watching the Sox game peripherally--which is a blessing given that Sox pitchers have been grossly underperforming for a second consecutive day. To this point, only Aardsma has been impressive. I'm fairly certain I'm making Patty crazy with my many deep sighs and occasional tantrums, particularly since we're only in game two of the season.

Kathleen underwent a complete gastrointestinal workup today (upper GI and colonoscopy) at St. Joseph's Hospital in Joliet. They found 14 polyps in her colon, and pre-ulcerative irritation in her stomach lining. Our understanding is that doctors don't feel there is any immediate cause for worry, although she may need to wait as much as a month to receive conclusive results. Kathleen is at home and is resting after a long (and none-too-comfortable) day; we hope she'll be feeling better in short order.

Love,
Brian

An early start

Hi everyone:

We had an early start to our morning. First, we dropped Connor off at his school for honor choir at 7:40. Then, with the help of our friend Denise, we dropped off our vehicle for yet another round of diagnostics. It's been doing some strange shuddering, particularly on cold, damp days. Even with a transplant seeming more and more like a long shot, we've been pretty religious about keeping the car in decent condition; we never know when we might get THE call in the middle of the night.

Other than a tiny hint of nausea when she first awakened, Patty hasn't had any real negative symptoms this morning. I snapped this photo as she was pulling ingredients together for a dinner of roasted chicken, stuffing and potatoes. Whenever Patty can muster the energy to plan and prepare a meal for the kids, she seems to approach the task with real enthusiasm. As she describes it, it's an opportunity to feel that she's really being a Mom.

Well, I need to start into some work, so I'll sign off for now.

Love,
Brian

History 101

Hi everyone:

From time to time, I take a few tentative stabs at trying to weave together many of Patty's health experiences into some sort of formal story, so that her ultimate success might serve as a source of information and optimism for others.

I have read several books written by transplant recipients or their family members, and think that Patty's story could add some new angles on an interesting issue. I don't know that anything will ever come of this, but it's somewhat cathartic, anyway, to translate the experiences into words.

Anyway, I share this only as background to what I really wanted to note, for some inane reason. In my research I discovered that on the day Patty was born -- August 5, 1961 -- the Chicago Bears played an exhibition game against the Montreal Alouettes of the Canadian Football League. As expected, the Bears prevailed, by a score of 34-16; in fact, of seven games between the two leagues between 1950 and 1961, six were won by the NFL team (most by a wide margin.)

This information doesn't really mean much of anything, but I thought it was interesting and worth capturing somewhere. Sorry for wasting your time with my archiving of trivia. All in all, Patty had a pretty good day and evening. More tomorrow...

Love,

Brian

Planet Earth (or a microcosm of same)

Hi everyone:



You know Patty is having a stronger-than-average day when you see her enter her predatory phase (as pictured). I had placed the plastic Ziploc container (or, if you like, prey) in the sink not 30 seconds before. Had I attempted to capture Patty's pounce, the image would certainly have been blurred, but from this image you can see the container clearly stood no chance.

Love,
Brian

P.S. I'm still in shock about the Sox.

Monday, Monday

Hi everyone:

Patty is feeling pretty well today, after a fairly rough start. She shopped for bridal shower items for Saturday with Kathleen, and went for a longer-than-typical walk with me. Of course, I forgot my memory card for my camera, so I have no pictures to share. I watched the Sox game, which was of course a nightmare; I realize it was only the first game, but I hope we've seen the last of pitching like that. Tonight, Patty is relaxing and watching some TV. And that's our story for today.

Love,
Brian

Waw waw wee wah

Hi everyone:

Last night, Patty and I went out for dinner at Francesca's Passagio in Naperville, where our patient took care of her pork chop craving in grand fashion. The timing wasn't right for taking in a movie, so we just had dinner and a drink and spent the later part of our evening at home by the fire. Like an idiot, I forgot to bring the camera with me to dinner, so you'll have to settle for a photo taken after we returned home.

As you can see, Patty was absolutely radiant last night, and her smiles and laughter were flowing freely. There is such a profound difference between this version of Patty and the post-chemo Patty that I sometimes want us to stay up all night so this version can stick around just a little longer. Unfortunately, even at her best Patty has limitations, and the next morning often bears little witness to the joy of the night before. I just love this photo.

This morning, Patty awakened with a headache and some nausea, although she has been improving as the morning has evolved. If our home doesn't blow away (the winds are incredible today), we plan to enjoy a lazy afternoon of DVD watching before our kids return this evening.

Tomorrow marks the start of the White Sox season -- I can't wait. My goal this year is to get to more of the games, because there's something about being there that TV just can't replicate. Go Sox!

Love,
Brian

If only it were this easy...

So Oz brought a pair of tinsmith's shears and cut a small, square hole in the left side of the Tin Woodman's breast. Then, going to a chest of drawers, he took out a pretty heart, made entirely of silk and stuffed with sawdust.

"Isn't it a beauty?" he asked.

-- L. Frank Baum, The Wizard of Oz