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

Saturday (a slow one)

Hi everyone:

Patty is well today -- no headache and no nausea. We've been pretty lazy today, but have plans to go out tonight for a bite to eat and to watch an as-yet-unchosen flick (perhaps Zodiac?) We saw Connor briefly today when he popped in for the Bears Fan Convention tickets; it was nice to see him. And that's our day, so far. Exciting, n'est pas?

Love,
Brian

A nice visit, and a resurgence of crappy health

Hi everyone:

The picture to the right pretty much tells the whole story about how Patty is feeling today. From the time she opened her eyes this morning, she has been tormented by a crushing headache and associated nausea. This has become a familiar refrain -- from Patty's point of view, I think it's far too familiar. She stayed in bed almost until noon, and still isn't feeling better. I suspect this will be a day of limited activity, unless of course Patty makes a surprising turnaround.

Last night, we were visited for a couple of hours by Emily -- a former student of Patty's who I've always thought was like my little sister, or perhaps an unofficial niece -- and her girlfriend Amanda. Emily was one of a group of students who were, individually and as a group, remarkable. Brad, Joy, Nate, Sean (now Roxie), Jennifer and others were among the first students whose artistic talent I saw Patty nurture, and they in turn made Patty feel very valued as a teacher. I respect them, and I admire Patty for her part in helping them grow.

We don't have specific plans for the weekend, other than to relax and let Patty recover. Steve still has the three kids until Sunday evening. The Chicago Bears were kind enough to offer us tickets to the sold-out Fan Convention downtown this weekend. Patty is not up for a long day like that, so Steve, the kids, their uncle and cousin are planning to go. Given the disharmony in the Bears organization these days, this could be quite a show.

That's all for now...more later if there's more to share.

Love,
Brian

Amanda, Emily, Patty

A short walk yesterday afternoon; we cut it short because Patty ran out of breath, but did another short walk later at night

Now that's better

Hi everyone:

Patty is feeling much better today, and has been pretty energetic. She is still experiencing breathlessness, a problem that had been largely absent for several months until its reappearance a few days ago; thankfully, though, even these symptoms have been milder.

With the added energy came some real industry. Patty grabbed the phone and tackled a number of nagging matters, including a call to my health insurance company to find out why they arbitrarily bumped up my health premium by nearly 40% (and in the process drove our combined monthly premiums dangerously close to four figures...ouch.) Patty plays "bad cop" much better than I can, although she didn't win this particular battle.

Today, we heard back from one of Patty's doctors, who suggested that she would like Patty to undergo one more round of the Rituxan/Cytoxan, and then perhaps consider total lymphoid irradiation. We're waiting for the doctors to talk to one another so that we can establish a more complex plan of action based on more concrete information. Patty has said she will consider it if they can explain to her why the recent results are "encouraging", particularly when previous measures (e.g., late last year) seemed much more so.

The doctor also commented on the whole issue of adult stem cells, which is apparently a significant interest of hers. Her position was that while there has been some research that has been encouraging, and some case studies that seem very optimistic, she has ultimately found many more reasons to be skeptical than enthusiastic. She explained that many of the success stories do not continue to show success over time, and several tests have yielded few positive outcomes. She did say that this is an area worth watching over time, but that we should not include it in our hopes for Patty. We will keep considering this and any other ideas, so please feel free to share whatever you see and hear; you never know...

Love,
Brian

Better...but far from perfect

Hi everyone:

Patty is feeling better today than she was yesterday, although she continues to have a moderate headache and is rendered breathless and weak by nearly any activity. Were you to hear her in this state, you'd be alarmed; I know I was -- even more alarmed than I was when I suffered through the film Rocky Balboa the other night, or when I experienced a commercial for Super Colon Cleanse (for real).

Of course, Patty's inability to breathe didn't prevent her from cleaning the kitchen and doing other household chores while I was out running errands this afternoon. She just asked me to include that she feels more like a real person, with real value, when she can actually accomplish something. To keep me from nagging, though, she is now relaxing on the sofa and hoping her headache will hasten its departure.

We're in a holding pattern now, as we await word from Patty's doctors about next steps. The sense we're getting is that they will push Patty toward doing more rounds of chemotherapy, based again on this supposed "success" in reducing the antibodies up to now. Our position, at least at this moment, is that we want to first hear a good argument for continuing this therapy; for example, if we hear that the second PRA number (100%) is not significant, and that only the first (58%) is, then perhaps that would give us a fair reason to talk. This whole realm is just so confusing, and it doesn't help when we're hearing second-hand messages. Arghh...

Love,
Brian

One more before bedtime

Hi everyone:

Patty is still feeling weak and tired, and through the evening has witnessed a resurgence of her typical post-chemo symptoms. She has had her animated moments, but they keep being chased away by headache or stomach cramps. I suspect we'll be calling our night shortly.

My Toronto Maple Leafs defeated the Carolina Hurricanes 6-1 in a game crucial to their playoff hunt; I realize this means little to many readers of this blog, but it sure provides me a pleasant distraction at times. Patty even gets worked up by the games -- although necessarily less so than usual tonight. With the Leafs flirting with a playoff berth, and with the White Sox regular season fast approaching, there may well be a lot of sports to keep me company while Patty dozes.

Let's all hope for a better tomorrow for our patient.

Love,
Brian

A sad and scary day

Hi everyone:

We received a call today with Patty's latest PRA numbers -- 58% and 100%. These reflect measures after two treatment cycles of Rituxan/Cytoxan. Even though the change is negligible from the previous cycle (60/100), one member of the transplant team apparently regarded the change as very encouraging. To be honest, we find this assessment both odd and a little frustrating. Okay, to be really honest, my first response was to feel a bit pissed off. We suppose there's a more microscopic view of these statistics that is beyond our current understanding, but on the surface they seem very discouraging.

Consider the history of PRA results since they started measuring (around the time Patty was listed for transplant):

June 3/06 65/100

July 23/06 44/95

August 23/06 07/92

October 6/06 65/100 (unconfirmed)

November 6/06 93/100

February 21/07 70/100

March 12/07 60/100

March 27/07 58/100

On September 8, 2006, while undergoing plasmapheresis, Patty's plasma was replaced with human plasma, to the surprise of doctors but in keeping with the "standard" protocol for the procedure. We were assured at the time that it could make no difference in PRA levels (I believe we heard "1 in 10,000"); we may never know for certain, but the change between August and October is a bit curious. Even so, the 92% on August 23 still suggests we were looking at a long shot. Based on the complete history, including these recent results, it will take some convincing for us to see these numbers in a positive light.

Okay, now that I've covered off the sad portion promised in the title, let's turn our attention to the scary part. Patty started the day feeling markedly better than she had felt on Sunday or Monday. She did have some mild nausea upon awakening, and she still had traces of headache, but overall was seeming much more like her normal self (why do I always want to put "normal" in quotes?) Alas, the happy part ends here. Late in the morning, Patty was in the shower when she suddenly felt very shaky and weak, enough so that she needed to cut her shower short. She also started having difficulty catching her breath, even while sitting still. I checked her blood pressure, which ranged from 60/44 to 72/55, both of which are very low measures, even for Patty. From that point forward, Patty has felt very weak and lacking in energy, and has been battling shortness of breath. She's sleeping now.

I feel so much for my wonderful friend right now. She is frustrated by the illness borne of her treatments, disheartened by these latest results, exasperated by the doctor's interpretation of same, and worried about these latest symptoms. She is saddened that a week with great weather and without the kids isn't allowing her any time to get out of the house with me. She doesn't like it when I talk too much about her emotional state -- out of fear others will see her as a "complainer" -- but I can tell all of this is taking a toll on her spirits. She is missing the counsel of her parents, worrying about the kids and me, wanting to feel useful, and yearning for the life she was loving so much. I just want her to catch a real break -- and it makes me so angry that I can't make it happen.

Love,

Brian

P.S. Sorry about the rant. On the plus side, it sure was nice to see Patty smiling through much of the morning.

And so on, and so on

Hi everyone:

Patty has felt terrible all day. Her head continues to ache incessantly, and the only real relief comes from taking a medicine that pretty much knocks her out for hours. The photo to the left was taken just moments after Patty arose from a three-hour nap (this after a two-hour nap in the morning.) As much as I miss her companionship, there's something to be said for avoiding pain, even if the only means to that end is to render yourself unconscious.

In the comments from one of yesterday's posts, our friend Dawn shared an article about adult stem cells as a treatment to stall and/or reverse heart disease (thanks, Dawn.) I shared this article with Patty's doctors, who have not yet reacted. I think we raised this idea once in the past and were told either that Patty's heart was too far gone, or that too much time had passed since her heart attack, for this to be a viable option. If I hear a different position, I will share it. The interesting wrinkle in this article that sets it apart from others I have read is that it suggests this procedure helped someone long after they had a heart attack. Interesting...

Patty's spirits seem to have taken a bit of a beating this time around. Clearly, she is tired and frustrated about feeling ill from the side effects of medicines that have yet to prove their merits. I looked back at the blog entries from her previous infusion, in the hopes I could suggest to her that tomorrow will be a better day. Unfortunately, Patty's last treatment coincided with her getting the flu, so it's really hard to predict how long it will take for her to feel better. Let's hope it's soon.

Love,
Brian

Chemo food, part I

Grilled Hebrew National hot dog on a toasted garlic bun with mustard, red onions, pickles and plum tomatoes

Still ailing

Hi everyone:

During all of the hours in which Patty has been awake and alert today, she has been plagued by a headache. Thankfully, she has been able to sleep for much of the time.

While I was doing some research today into the use of rituximab (Rituxan) to reduce panel reactive antibodies (PRA), I found one study that suggested that 80% of highly sensitized patients (like Patty) had either a reduction in their PRA or a change in the specificity of their antibodies after receiving treatment with rituximab. One pediatric patient saw a reduction of PRA from 55% to 18%. I wonder what it is about Patty that renders her incapable of realizing the antibody reductions that others have achieved. Perhaps the next round of PRA results will demonstrate that I'm speaking too soon.

The same research report said that there are 5,000 persons in the U.S. with a PRA above 80% awaiting kidney transplants at any given time; of these, only 300 receive a transplant each year, and these require strict adherence to anti-rejection protocols, because they have a much greater tendency to experience rejection episodes of some severity soon after transplant. This is a worry of ours -- will Patty receive a transplant, only to be subjected to a barrage of other medicines that render her even less capable of living a "normal" life?

The patient has awakened, so I'm going to sign off to spend some time with her. Please keep her in your best thoughts for a quick rebound from these troublesome meds.

Love,

Brian

No surprises here

Hi everyone:

As anticipated, Patty awakened this morning to pretty severe nausea, headache and fatigue, and has continued to fare poorly throughout the day; the term "generally well tolerated" must really mean, in most instances, "within the patient's ability to endure, albeit barely." Patty moved from the bed to the sofa, but has had little motivation to be much more active than that.

If history serves as our guide, we can anticipate that Patty will be feeling rough for the next several days. I continue to be in awe of her toughness and perseverance; under the same circumstances, I doubt I would hold up as admirably.

For the second time in as many days, Patty experienced an irregular heart rhythm; this one felt erratic enough that Patty found it unsettling. These two incidents were the first in more than two weeks; we had fooled ourselves into thinking the reintroduction of metoprolol into Patty's drug regimen had taken care of the problem. Still, it's fair to say the frequency of her arrhythmias has been reduced.

Trish and Kathleen visited last night, and Kathleen is continuing her visit today; feel free to offer sympathy for the latter (okay, okay, I'm kidding.)

Please keep your fingers crossed that Patty will bounce back more quickly this time around.

Love,
Brian

Rituxan/Cytoxan -- round three

Hi everyone:

Patty completed her third round of Rituxan/Cytoxan this afternoon; as usual, she slept for much of the time, and is home and doing pretty well right now. Before the infusion, Patty's blood was drawn, and we packed it up and mailed it before noon. With luck, we'll get the PRA results earlier this time (late next week, perhaps); with some real luck, perhaps the numbers will be much more encouraging. I still find it astounding that a PRA of 20% is considered high, when Patty's is at 100%.

Can one or more of the statisticians in the family figure out what the odds are against a successful match if on one front Patty is incompatible with 60 of 100 prospects, and on another she's a no-go with 100 of 100, and both fronts are near-absolute factors against a transplant? For example, I know that if the second number was 90 out of 100, the incompatible group would be greater than 90 percent, because of the other PRA factor of 60/100. I guess I'm just trying to grasp what might ultimately seem like a hopeful set of numbers. I know that 0%/0% would be a nice goal.

As you can see from the photo, Patty started the day feeling energetic and in good spirits. She seems to be in a similar state now, after a day of deep napping. I don't want to sound too pessimistic, but I suspect Patty will be in a different condition over the next couple of days, once the meds start to kick in. Have a great weekend, everyone.

Love,
Brian

A nice day

Hi everyone:

On the day before the next round of Rituxan/Cytoxan, our patient is doing well; let's see if I'm reporting similar things after her next infusion. We hope to break away from my work for a half hour or so this afternoon to enjoy a walk on this beautiful day. Some of Patty's students are coming to the house after school to have Patty look at their portfolios, and just to have some "Mrs. O'C" time.

We were disappointed yesterday that we were never able to reach Devin to wish him a Happy Birthday. Now we have just a few weeks before Kelly's birthday comes around. After tomorrow, the kids will be on Spring Break, and Patty and I will have some kid-free time.

That's all that is happening around here; I'll be back with more when something else happens.

Love,
Brian

March 21

Not much going on

Hi everyone:

Patty is having yet another decent day, which may be a bit surprising given that she slept on the sofa all through the night to "keep me company" while I plugged away on a rush project; to be honest, I did keep at it longer because she was in the same room.

We're almost three weeks out from her last Rituxan/Cytoxan infusion, and just days away from her next; I haven't checked the archived messages, but I suspect we would find that Patty fared better the further removed she was from each round of infusions.

We're going out for dinner tonight to celebrate Connor's birthday (yesterday). That's pretty much the whole story about our circumstances; I'll write again if there's anything new to share.

Love,
Brian

March 19

Two ships passing in the night...

Hi everyone:

The past couple of days have been somewhat chaotic in our home, even in the absence of children. We had visitors both Friday and Saturday nights, and briefly on Sunday; this gives me some companionship during the times when Patty just doesn't have the energy to stay awake and active.

Other than a walk yesterday afternoon (during which we ventured over the the kids' "clubhouse", pictured, which we now think of as perhaps the most dangerous place on earth), Patty and I have had far fewer opportunities than normal to just enjoy each other's company.

I have been keeping crazy hours working on a couple of demanding client/prospect efforts, while Patty has been juggling bridal shower plans, medical appointment schedules and numerous other picky details. I wrapped up my work last night at 5am, just 30 minutes before Patty got up to take Kelly to school for an early field trip departure. I awakened later this morning, just in time to see Patty off to bed for a long nap. And the cycle continues...

Here's the good news -- through the past several days, Patty has felt pretty decent for much of the time. She is still very tired for at least part of most days, and she still has to tackle nausea most mornings before she starts her day, but the past week has been pretty pleasant for her, overall.

Of course, this will all likely change after she goes for round three (or is it four?) of Rituxan/Cytoxan on Friday. On the same day, Patty's blood will again be drawn for the PRA test, the results of which we should have in about a week. If the numbers aren't encouraging, we plan to have a serious conversation with her doctors about what should and should not be part of her future care. I think Patty is reaching the point where she feels she wants to try to do anything reasonable to preserve a healthy future, but is also starting to redefine what she considers "reasonable." Let's just keep our fingers crossed for better numbers this time.

Love,

Brian

Late nights, lasagna, labors and lethargy

Hi everyone:

Patty is tired today, and started the morning feeling pretty nauseous, but she is coming around as the day progresses. We had visits last night from Cindy, Trish and two Jims. Patty headed off to bed at 1:30 am, and I sat up chatting with Cindy until 4 am. Today, I prepared three pans of lasagna -- two for the freezer, and one for dinner tonight. Now, as Patty watches TV, I'm working on a client project. A late afternoon nap will likely be part of our day's schedule. I'll get back to you if anything more interesting transpires.

Love,
Brian

So far, so good

Hi everyone:

Patty started out the morning feeling nauseous, but seems to be gradually coming around thanks to her potpourri of morning pills (she also has mid-day pills and evening pills.) This may turn out to be a decent day for her, after all.

My original plan for this morning was to meet with a client in Lake Forest, but that was postponed at the last minute. As I eased my frenetic pace and switched from dress pants/sweater to pajama bottoms/T-shirt, Patty said that she was still feeling tired and would likely go back to sleep. I felt she would rest more comfortably with fewer lights on, and as I turned them off I shared with her my thinking -- unfortunately, what came out was that I wanted her to more easily "rest in peace." Oops.

I'll catch you up on Patty when she's up and moving around.

Love,
Brian

P.S. Amid the sea of blackbirds and chickadees around our bird feeders, I have noticed robins and cardinals over the past couple of days, which usually convinces me that consistently warmer weather should be on its way -- and that we're only a few weeks away from a time when we can realistically hope Sox pitchers will collectively have an ERA of less than 10.00. Fortunately, these games mean nothing...except, of course, the games against the Cubs. Go Sox.

Doing okay

Hi everyone:

Patty says she feels "just fine" today. Although she has an occasional cough and sporadically experiences the same minor symptoms she always has, she is enjoying a second consecutive day of decent physical health. It's a good thing that superstitious thoughts seldom translate into realities, or I may well have condemned Patty to a miserable day tomorrow. Perhaps this time we'll defy the pattern and she'll just keep feeling stronger with each successive day. Patty is enjoying the novel The Life You Longed For, a library book about a child with heart disease; it must be a good one, because it's hard to draw her away from the pages.

I did notice at one point today that Patty seemed distracted, and perhaps even a trifle distressed. When I asked her what was up, she said that she had been thinking about the latest PRA numbers, about the lack of success with techniques that have worked for many others, and about me and the kids, and she felt just a moment of hopelessness. I didn't know what to say, other than to share my belief that her toughness may take her farther than doctors could ever appreciate. Thankfully, Patty rarely dwells on anxieties; instead, she quickly adopts a pragmatic view and starts to plan next steps. I really admire this.

I'm racing to get material ready for a meeting tomorrow, so I'll sign off for now; if anything new arises, I'll be back in touch.

Love,
Brian

A big improvement (knock on wood)

Hi everyone:

The Patty of yesterday was but a mere quivering, miserable shadow of the much more vibrant and cheerful Patty of today. We were dragged out of bed at 6:45 am by PJ, who had missed his bus and needed a lift to school. Since we were awake, and as Patty was feeling much better than yesterday (after some very early nausea), we were able to get an early jump on our day. Patty did some adjustments to an e-vite, and we both did some laundry; now, I'm getting ready for a conference call and Patty is getting ready to relax for a while.

I'm admonishing Patty to pace herself in whatever activities she undertakes, because I don't want her to overdo it and end up in bed all day tomorrow. Although she is feeling generally well, she did have a very low fever when we took her temp this morning, so I don't want her to court trouble.

Today is my brother Dave's birthday -- have a good one, bro.

Love,

Brian

P.S. Patty felt it was important that I mention that she had done laundry this morning; she was afraid blog readers would think all she ever does is rest on the sofa. She speaks the truth -- I've seen the evidence.

One more addendum...

Hi everyone:

As I was reading Patty the previous blog entry, I felt some concern that blog readers might feel I'm not being sufficiently positive in my messages, for Patty's sake. At the start of all of this, and months before the blog was conceived, we agreed we would do our very best to understand all aspects of Patty's condition, both good and bad, and that we would share what we learned without any candy-coating. Patty feels that information is vital to her ability to cope with this situation, and I feel the same way. So please don't worry, if you are, that I'm taking the wind out of Patty's sails; we're both feeling that knowledge is one important part of any possible solution.

Love,
Brian

P.S. It's 3:45pm, and only moments ago was Patty first able to emerge from our bedroom, to make the short trek to the sofa; she's really having a pretty miserable day.

The Emory Algorithm

Hi everyone:

Each time we receive updated PRA numbers, I feel compelled to learn more about the whole issue of pretransplant sensitization. Often, this involves re-visiting material I've already read, but sometimes it yields new nuggets of information...and sometimes it just leads to greater confusion. I think this curiosity is a bit frustrating for Patty's doctors, because we are sometimes challenging them based on data that may be dated and therefore inaccurate, or that is contradicted by other studies. I'm not afraid to admit that I'm sure, at times, that I'm getting the information almost entirely wrong. For anyone who is curious about the nitty-gritty, below is what I've been encountering most recently.

This morning, I read a study from 1996 that showed that people with PRA levels similar to Patty's typically do not survive as long as those with low PRA levels, even if a suitable crossmatch is found. In this particular study, the three-year survival of patients with a PRA over 11% (Patty is at 100%) was 39-56%, depending on the type of sensitivity, as opposed to 76-78% for those with low PRA levels. Ultimately, do these numbers mean anything, because they were reported in 1996? We don't know, but they sure provide food for thought. Other study results suggest that the PRA numbers are too highly regarded as a factor in considering a person eligible for transplant, and that they don't ultimately factor into measures of rejection and/or survival if the crossmatch is, as desired, negative. In still another study, the results suggested that even a transplant against positive crossmatch could be performed without significant long-term consequences. Do you see the conundrum here?

I read with great interest some recent stories about a new decision process called the Emory Algorithm. In brief, this algorithm is used to help refine the process of determining whether or not a person will tolerate a transplanted organ (most often, in this case, a kidney), by identifying specific antigens that would cause a negative response to a transplanted organ. My hope was that we might find that within Patty's numbers, even though they are high, there might be some pathways to a successful transplant. With mild optimism, I contacted Patty's cardiac team; one member replied:

The Emory Algorithm, from my read, is a listing strategy where they find "unacceptable antigens" and then let the organ bank know. We do this also for highly sensitized patients; unfortunately, Patty has such numerous antibodies to preclude listing them as unacceptable.

Of course, Patty wouldn't be Patty if she didn't stand out, even among a group of people who themselves stand out because of their high PRA levels. If I understand correctly, the whole PRA mess goes beyond just the 60/100 number, to include both sensitivity (the PRA percentage) and specificity (the specific markers within those percentages that rule out, or rule in, a possible candidate). Unless I'm mistaken, Patty is pretty much off the charts in both regards.

My reading, and my hope for some magical answer, continues...

Love,
Brian