Sunday, April 29, 2007

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





Friday, April 27, 2007

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....


Thursday, April 26, 2007

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

Wednesday, April 25, 2007

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

Tuesday, April 24, 2007

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

Monday, April 23, 2007

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

Sunday, April 22, 2007

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

Friday, April 20, 2007

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)

Thursday, April 19, 2007

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.

Tuesday, April 17, 2007

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

Monday, April 16, 2007

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

Sunday, April 15, 2007

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.

Saturday, April 14, 2007

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.

Thursday, April 12, 2007

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)

Wednesday, April 11, 2007

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

Tuesday, April 10, 2007

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

Monday, April 09, 2007

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

Sunday, April 08, 2007

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

Saturday, April 07, 2007

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

Thursday, April 05, 2007

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...)

Wednesday, April 04, 2007

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

Tuesday, April 03, 2007

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

Monday, April 02, 2007

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

Sunday, April 01, 2007

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