The flu...anew

Hi everyone:

What a difference a day can make! Aside from the disappointing news about the PRA, we had a pretty nice day yesterday. The weather was so pleasant that we had a fire outside on our patio; Patty, who rarely ventured out for campfires last summer (because of the mosquito factor), bundled up and stayed out for hours.

The kids (ours and several others) jumped on the trampoline and played across many of the yards of the neighborhood. When Patty decided the chill in the air was too much, we moved into the house and watched TV and chatted for several more hours. For a bad-news day, we made the most of it.

For most of the day, Patty was in pretty good spirits, although she was at times philosophical about what our decisions should be regarding future treatment. We even joked that perhaps the weather change was symbolic, and that this was perhaps a turning point both for the seasons and for Patty's fortunes.

From time to time, our thoughts and words would turn a bit darker, and Patty wondered aloud just how much more sickness she would voluntarily endure for the sake of a goal (a new heart) that seems ever-elusive.

Patty's condition today has done little to shore up her spirits. She is feeling very weak, her throat is sore, her voice seems strained and crackling, her head is aching, she's nauseous and she sounds depressed. We suspect that the flu retreated for just a day and is now back with a vengeance. Fortunately, Patty so far has not had a fever to the extent the boys did; if this enters the equation, I suspect we'll be making a trip to Edward Hospital.
The kids have an early dismissal today...sigh...

Love,
Brian

A better moment

Hi everyone:

As a pleasant aside to the unpleasant news (previous message, below), Patty seems to be better today than she was the past two days. She still has chest congestion, and isn't especially energetic, but she just seems a bit more animated than she was over the weekend. We take what we can get, most days...

We ran an errand to the bank together this morning, and then stopped for a burger and a shake at Johnny Rocket's, which just recently opened near our home. While we were there, I snapped the photo to the right; I really like it, although you can imagine Patty's excitement in seeing the camera emerge from under the table.

Now, I have to get back to work, and our patient is relaxing (and perhaps snoozing--I haven't checked) on the sofa.

Love,
Brian

This sucks...but it sure looks nice!

Hi everyone:

For those of you who read the blog regularly, you'll know that the number above is far, far, far from ideal; I just wanted to try out a new Illustrator technique, so it's really just a sow's ear.

I suspect it would take a pretty optimistic doctor, even, to say that the reduction from 70/100 to 60/100 is one to greet with much enthusiasm. To flog a dead horse, if either number stays high -- for example, 100% -- it's extremely unlikely for a transplant candidate to receive a donor organ. For those of you who have read my constant descriptions of PRA, I'll spare the lengthy version today; suffice it to say that these aren't good numbers.

If you prefer to regard these numbers from an optimistic viewpoint, you could perhaps derive some comfort from the idea that in one month, one of the numbers dropped, and that subsequent treatments might make a further difference. By the end of the month, we should have another number, this time reflecting the second month of treatment. However, even if the 60% figure drops to, say, 10%, we will really be no further ahead if the second number stays high.

Sorry to sound like such a downer, here -- there are huge chinks in my armor from seeing Patty sick so often, particularly when it seems like the suffering was, in retrospect, all for naught. In fact, Patty has again started talking about when to say, "Enough is enough," at least as regards trying new things; I think she's hopeful she can beat the odds with the heart she has, at least for a while. I just want her to be well and happy, regardless of the means to that end.

Love,

Brian

Patty and the flu

Hi everyone:

Fever, headache, profound fatigue, chest congestion, cough -- these have been Patty's more-or-less constant companions over the past couple of days. It appears the flu did not overlook our patient, and all that remains to be seen is the severity of the symptoms to come. To be frank, I'm nervous; we just don't know what to expect. I've witnessed what PJ and Connor have gone through, and I'm afraid Patty will fare worse, because of her immunosuppressed state.

PJ still has a persistent cough more than a week after his onset of symptoms. Connor missed school Thursday and Friday, and only today is starting to seem himself. To date, Kelly and I have dodged the bullet. Please keep your fingers crossed that Patty will get through this with minimal discomfort.

The weather this weekend has been so unbelievably nice that, even in their weakened condition, Patty and Connor managed to spend some time outside with me yesterday. While Patty and I walked, Connor inline skated. By the time our half-hour excursion wrapped up, both of my companions were pooped. Still, it was nice to get out for a while; even in short stretches, it makes us feel like we're part of the human race.

Kathleen dropped in last night for a visit. Patty wasn't really up for company, so Kathleen and I ventured over to Kicker's for a drink. Shortly after our return, I cooked up a ridiculously unhealthy late meal (featuring bacon, butter and cheese), and that pretty much wrapped up our night.

Today, we've done little. We watched An Inconvenient Truth, which is a very unsettling film, and have been relaxing in front of the Supernanny marathon this afternoon. I really haven't figured out yet why, when our youngest child is 10, we feel compelled to watch hour after hour of toddlers behaving badly, and yet here we are...

I'll keep you posted about Patty's progress with the flu.

Love,
Brian

Patty reads email and the blog

Kiddo

Patty & Brian

10,000 and counting

Hi everyone:

Just thought I'd mention that I noticed last night that we have had over 10,000 visits to the blog since we started measuring in July of 2006. Thanks for staying in touch.

Love,
Brian

Sick, sick, sick

Hi everyone:

Illness continues to be the predominant theme in our home. For the past two days, Patty hasn't ventured far from our bed because of nausea and vomiting, and Connor has been home with a fever. So far, Kelly and I have been spared, although I suspect we'll have our turn talking to "Ralph" soon enough. The only silver lining so far is that Patty's illness is related to chemotherapy side effects and not the flu; let's keep it that way. I don't much feel like preparing blog entries from Edward Hospital. I'll write again soon.

Love,
Brian

More walking wounded

Hi everyone:

Patty's biggest challenge today was fatigue; mercifully, she's been blessed with some respite from the headache and nausea, however brief. What's more, since she has been back on the beta blocker (metoprolol), her irregular heart rhythms have been much less frequent. This time, metoprolol doesn't seem to be problematic for Patty's blood pressure, either. These are all good things. However...

PJ missed his third consecutive day of school today. Patty took him to the doctor, who confirmed that PJ has influenza. If there's a silver lining here, it's that he does seem to be feeling marginally better, and his fevers are less frequent. At dinner this evening, Connor complained of feeling cold; of course, when we checked his temperature, it was in the 101 range. Here we go again...

We're very nervous now that our immunosuppressed patient here will be the next in line -- if she picks up the flu, this could get ugly. Doctors opted against giving her a flu shot this year simply because they were worried about side effects, so she's likely pretty vulnerable right now. Please keep your fingers crossed that she'll be passed over for this round of family illness.

Love,
Brian

Sick again...but on the mend?

Hi everyone:

Patty had another very rough morning, with yet another solid round of vomiting, but seems to have come around somewhat as the day has progressed. I'm relieved; I could see that these bouts of illness were starting to drain her, emotionally and physically. She continues to feel weak, but the nausea and headache of earlier today seem to have been quelled.

PJ continues to be felled by flu symptoms, although he seems a bit better today than yesterday. With luck, perhaps he'll be back on his feet (and back in school) tomorrow.

We would be willing to bet we're alone among our circle of friends and family in being able to claim that we shipped vials of blood through the mail yesterday (or at least we hope we are.) The process involves wrapping the vials of blood in several layers of plastic, foam and adhesive packaging, all marked with biohazard stickers and personalized labels. It seems so official and important...and I suppose it really is.

Both Patty and I are feeling that the Rituxan/Cytoxan combination is going to yield positive results. I predicted, with no basis for choosing as I did, that 40/70 would be her PRA numbers for this round; Patty opted not to guess. I really hope I overstated the numbers greatly, because 40/70 would represent progress, but would not make Patty a good candidate.

Love,
Brian

Another rough one

Hi everyone:

Patty is feeling better in one sense, and worse in another. She seems to have mostly shaken the nausea (improved even from earlier this morning), and her headache has diminished greatly. However, she is feeling what she describes as a "heaviness" in her chest that makes it harder for her to take deep breaths. By extension, she is feeling weak and is unable to stay awake. What's most unsettling for some reason was her observation, more than once: "I just don't like the way I'm feeling today."

PJ is home from school again today. He has been battling cold symptoms since late last week, and arrived home from his weekend feeling pretty rough. This morning, he threw up and then recorded a temperature of 102.6. He is hacking away in our bed, and generally feeling pretty miserable. I feel for the kid -- it can't be fun coughing and coughing when your head is pounding. As bad as I feel for PJ, I'm also anxious that whatever is afflicting him may also go after Patty; needless to say, that would not be good.

Love,
Brian

A "Heart for Patty" dinner

Hi everyone:

Anyone who attended the fundraiser dinner for Patty and our family last year may recall that one of the auction items up for grabs was a multi-course gourmet meal for eight persons in the home of the person with the winning bid. The meal was purchased by Neil McFadden and Eileen Pembroke -- thank you again. Kevin, Sharon and Neil, along with Kerry Shannon, Angela Zotos and Dennis Sobieski, attended to the guests' every wish -- and thank you again. Steve Byrne, who operates the wonderful fine-dining restaurant Sequel in Lombard, donated much of the food and wine for the evening. We are very grateful. Here are some images:









If you would like to see the complete photo set for the evening, visit
HERE.

Oddly enough, in our own home that evening we were also enjoying filet mignon open-faced sandwiches and Hudson Valley organic duck breast with a white peppercorn-cognac reduction -- funny, that. It sounds amazing. Thanks again, guys.

Love,
Patty & Brian

A very unpleasant day

Hi everyone:

Day two after Rituxan/Cytoxan infusion has proven to be much worse than day one. Patty threw up very shortly after awakening this morning, and has been bedridden with a pounding headache all day. A bath did little to improve her condition, and a root beer float ice cream bar didn't bring any magic. The only relief she has realized has come from sleep, so it's a bit of a blessing that she's also feeling weak and fatigued.

Tomorrow, we will send vials of Patty's blood for the PRA test; with luck, perhaps we'll hear back with some encouraging numbers within a week. I will feel very disappointed for Patty if she has to endure more toxic treatments with nothing positive to show for her suffering.

Love,
Brian

White Sox 6, Diamondbacks 5

Hi everyone:

The White Sox today secured their first Cactus League victory (after starting the preseason with four losses.) I'm excited -- I can't wait for the regular season to start, and I can't wait for the Sox to again win the World Series. A second championship, a new heart for my wife ... I think this could be a very good year.

Patty is still feeling dicey.

Love,

Brian

A nice night, a less pleasant day

Hi everyone:

Patty is feeling rough this morning, as we anticipated; her stomach is aching, and she's nauseous. If she follows the same pattern as for her last transfusion, she'll feel miserable for a couple of days, and will then slowly start to come around. She has already expressed her intent to stay pasted to the sofa for the entire day.

Our friends Cindy and Jim visited last night, and came bearing two bottles of Wiser's Deluxe, my favorite hard-to-find Canadian whiskey; for this, they immediately and irrevokably earn the "hero" designation. We watched the Leafs game; because the Leafs unexpectedly won this game (4-3 in a shootout) against a tough team, I've now become superstitious and have asked Cindy and Jim to watch tonight's game with us. Cindy stayed over, and is relaxing with us today; Jim plans to join us later.

Below are two more photos from last night:

Today...

As you can see, Patty was in pretty good spirits when she arrived at the hospital...

She didn't even seem too irritated when we had to wait 90 minutes to get started...

She had some brief stomach discomfort, presumably as a response to one of the drugs

And this is how she spent most of the next six hours (except for the occasional pee break)

She's doing just fine. Have a great weekend, everyone.

Love,

Brian

Off to the hospital

Hi everyone:

Patty and I will be leaving shortly for her next round of chemotherapy. She seems pretty energetic and strong again today. It seems like a shame, in a way, that we're heading off for treatment that is likely to make her feel run down, at best. Of course, the potential prize sometime soon could be a new heart, so I suppose we shouldn't complain about a few side effects.

I'll provide an update later. The kids will be with their other Dad for the weekend, so I'll use the time tackling some business tasks I've been wanting to address, and I suspect Patty will relax and recover from today.

Love,
Brian

Good day today, chemo tomorrow

Hi everyone:

Just a quick note to say that Patty has had a pretty strong day today, which is good news leading into her second Cytoxan/Rituxan infusion, which is scheduled for 8:30am tomorrow. I was away all day at a meeting, so Kathleen kept Patty company; I have to admit that I always feel more comfortable if Patty has another adult around if I'm away. Please keep your fingers crossed, your prayers coming fast and furious, and your optimism maximized for Patty -- we need these PRA numbers to come down. We should have new stats sometime later next week.

I'll write tomorrow after we get back from the hospital.

Love,
Brian

P.S. When I referred to Kathleen as an adult, I was using the term loosely; somehow, "monster" seemed awkward in that sentence.

A good day for Patty

Hi everyone:

I'm away from home for a rare night away on business, although I'm only about an hour from our house. I have an early morning tomorrow, though, so the close promixity to my meeting spot (and the associated avoidance of rush hour traffic) is nice. With Patty's health so unpredictable in nature, I feel a bit anxious about being away, but my wife has admonished me for fretting too much. Speaking of my wife, you'll be happy to hear that she's had a pretty energetic day. She was awake early, and was on top of her game for the whole time I was home today. Of course, she did consume four cups of coffee, so that may have been a factor. If there's more to report, I'll write again; otherwise, see you tomorrow.

Love,
Brian

Nausea, disappointment, impatience, neediness

Hi everyone:

Today was not a very good one for Patty. She has been struggling with nausea throughout the day; for the rest of the time, she has been sleeping. We're not speaking of sleep borne of laziness here; Patty truly cannot keep her eyes open. This exhaustion may squash Patty's hopes to return to work in the near future. Her desire was to go back on at least a part-time basis by this fall.

We're still waiting to hear from doctors about Patty's therapy this week. We doubt it will happen by Friday; then again, they scheduled it on a single day of notice the last time, so you never know. I'm so eager for them to draw blood for the next PRA reading. Patty seems pretty optimistic that this time around the drug regimen will yield a positive outcome; I'm sure not going to dissuade her from expecting a fair shake after so long. From a selfish position, I really need them to get this right, and soon.

Love,
Brian

P.S. Patty's not the only one ailing in our house -- PJ came home sick from school today, and I have been battling what seems to be a permanently sore stomach. It makes our home seem like an infirmary, don't you think?

Waiting, and waiting, and waiting

Hi everyone:

Today, Patty was mostly fine again, although she thinks she may be coming down with a mild cold. We went out late in the morning for a doctor's visit (this time for me), but we otherwise were homebodies. We might have contemplated a walk, but the slush would have made the process pretty unpleasant.

We're waiting to hear about the next round of Rituxan/Cytoxan. Our original understanding was that the infusions would happen every three weeks, which would mean that this Friday would be the target; if we don't hear by tomorrow, we'll call to follow up. Patty pointed out tonight that if the PRA numbers on the blood they should draw this week show significant progress, she could be a viable candidate for a donor heart within weeks. Wouldn't that be a wonderful way to spice up this blog?

Love,
Brian

And now for something completely different...

Hi everyone:

While following a link from a blog that Colin sent me, I discovered a fun application that compares a photo of you with the photos of many celebrities, and then selects those it feels look most like you. I think Patty looks like Helen Hunt, and I look like Philip Seymour Hoffman, but apparently the application didn't think so. I guess I'll just have to settle for looking like Hugh Grant. To see our results, follow this link: Patty & Brian's lookalikes.

Originally, I included the results on this page, but doing so messed up the formatting, so I posted them elsewhere; there's some junk on the page there, too, but you can still see the output, and that's what counts.

Patty again awakened very early this morning, dosed off from mid-morning until noon, and is now relaxing by the fire. Doesn't it sound like I'm describing a golden retriever instead of my wife? All in all, though, our patient is doing pretty well today.

Love,
Brian

More of the same

Hi everyone:

Patty's day was largely uneventful, and mostly pleasant. She awakened early, fell asleep for much of the morning, ran an errand around noon, socialized with me for much of the afternoon, had a long early evening nap while I worked, and has watched a movie with me (The Prestige -- okay, not great.)

We realized today that Patty had gone several days without any obvious arrhythmias; moments after we made note of this, she felt an irregular heartbeat. It figures...

As I write this, we've had only 25 visitors to the blog today, which I think is as low as I've seen since Christmas Day. It's funny, though, how I keep finding out that people I might not have expected to visit are popping in from time to time. It gives me comfort to know that so many people are pulling for Patty, and for all of us.

Love,
Brian

Better today

Hi everyone:

Patty is much better today than yesterday. She started the day feeling nauseous, but has rebounded. The kids are going with their other Dad for the weekend, so we're looking forward to a quieter home for a couple of days. I'm hoping to devote some time to marketing of my business; I think Patty is planning to just recharge her batteries before her next round of Rituxan/Cytoxan. More soon...

Love,
Brian

Kelly...Live!!!

Hi everyone:

I attended Kelly's choir concert at school tonight. Kelly did a great job, and the music choices were great. What's more, three grades (6, 7 and 8) were able to complete all of their performances in about 45 minutes.

Unfortunately, Patty is still feeling heavy-duty nausea, so she was unable to attend.

Love,
Brian

A rough one

Hi everyone:

Patty is having a rough day. She struggled with nausea all morning, and started the noon hour with a round of vomiting -- hence, there's little else to share at this point. I'll try to write again later today.

Love,
Brian

Talk with the doc

Hi everyone:

Patty's appointment this morning with Dr. Costanzo was, as anticipated, largely uneventful. Her ICD was interrogated, which showed that there are still some odd rhythms happening; these aren't necessarily cause for real concern, but they bear watching. For example, her heart will sometimes beat at an accelerated rate for just a few beats, and will go back to normal without intervention.

Based on the data from Patty's ICD, Dr. Costanzo put Patty back on a low dose of Toprol XL, a beta blocker, to help resolve this issue. Patty tends to experience a drop in blood pressure (sometimes fairly pronounced) on beta blockers, so we'll see how she fares this time around.

Upon completing a physical examination of Patty, Dr. Costanzo said that our patient sounds really well, all things considered; in fact, she said that if she did not know about Patty's condition, she would presume Patty was in pretty good health. Patty then said, "Does this mean I could keep going for years on the heart I have, if a transplant is slow in coming?" The doctor said that she wouldn't agree that Patty could survive for years, but she is encouraged by the fact Patty has not yet had a steady, progressive decline since she has been listed for transplant. We both know, though, that circumstances can change at any moment, as was pretty much the case when Patty had a sudden drop in heart function early last summer.

This afternoon, we received a call from the University of Chicago. Patty's panel reactive antibodies (PRA) level, from a blood draw immediately before she received the Rituxan/Cytoxan infusion, was 70/100. For those who are newer to the blog, this means that Patty's body would reject 70% of potential donor hearts based on one cell type, and 100% of hearts based on another. In other words, barring a very unlikely turn of fortune, Patty is not yet a good candidate for a heart transplant.

Blood will be drawn before the next round of Rituxan/Cytoxan (likely late next week), and the numbers will be measured again. We should know, within the next couple of weeks, whether or not Patty is making progress in reducing her antibodies. If this treatment is unsuccessful, the next option would be total lymphoid irradiation (TLI)...and likely another battle with the insurance company about the value of this treatment.

If I understand correctly, TLI is used for purposes of immunosuppression and treatment of autoimmune disorders. It may also be used to help a patient tolerate a transplanted organ. Generally, side effects are not severe. If that doesn't work, I suspect we'll have pretty much run out of options, and will have to resort to crossing our fingers and hoping against hope a perfect match falls into our lap.

The drama builds...

Love,
Brian

The decline of the English language...or not?

Hi everyone:

Full of righteous indignation, I sat down one more time tonight to mock Patty for making up a word, since she had laughed so heartily the other day when I referred to something as "boughten." I was going to ask blog readers to weigh in with their opinion about which they felt was worse -- the aforementioned "boughten," or Patty's word, "horrification." As it turns out, both are real -- albeit far from ideal -- words. Once this fact settled in, we then started to debate which word was more real. We really need to get out more...and read more.

Love,
Brian

P.S. I'm sorry I said "boughten" -- I'm still cringing, really.

To the doc tomorrow

Hi everyone:

Today was a decent day for our patient. She slept through much of the morning, but was fairly energetic through the rest of the day, aside from some stomach cramping later in the afternoon.

Our hope is that as we get further from the date of the rituximab/cytoxan administration, Patty will continue to improve. Our research suggests that subsequent doses of rituximab do not tend to have as many side effects as the initial dose, so perhaps the next go-round will be better than this one. Of course, our research doesn't suggest the same of Cytoxan, which has always caused Patty to be fairly miserable. Keep your fingers crossed.

Tomorrow, Patty has a routine follow-up appointment with Dr. Costanzo. We don't expect any major light bulbs to illuminate during this visit; if anything transpires, you'll hear about it here. Wow, has this ever been a dry spell in terms of sharing interesting news.

Love,
Brian

Sloth, pure and simple

Hi everyone:

Today, the only thing about which our home has been enthusiastic is our sloth. Patty is still feeling fatigued and nauseous, and I seem to be plagued by all manner of aches and pains. The kids have a day off, which has translated into bodies draped over furniture and repeated trips to the fridge for boredom snacks. We're a pretty unenthused bunch.

Yesterday, by contrast, was a special and fairly active day. I asked Kelly out on a "date" for lunch and a movie. I even prepared a hand-made invitation, to which I received a hand-made reply; I'm perhaps ridiculously sentimental, but I found the whole exchange somewhat touching. After burgers at Red Robin and some poor attempts at video game play, we watched a movie together. It really was a nice afternoon. I hope to plan similar outings with the other kids, including Devin and Colin when they're in town.

After I sign off, I'm running Connor and his friend Alec to the theater to watch Ghost Rider; thankfully, I will not be joining them. Patty is watching Law & Order episodes and just generally feeling weak and crappy. I'll get back with you if anything else happens...

Love,
Brian

Many memories

Hi everyone:

I was recently flipping through some recent and older photographs; while doing so, I discovered not only that we have taken an incredibly huge number of pictures along the way, but also that most have rich meaning to me and to Patty. Should you show them to Patty or I, you may fall victim to a very long and tedious story (or stories.)

For example, the second photo in the second row is of me with our nephew Ian, during a vacation our family took in Canada; I hadn't seen Ian in some time, and yet he was an entirely natural extension of our normal crew. The fifth picture in the fifth row shows Kelly at her first communion. On that day, she was, far and away, the most beautiful little girl in the world. Row five, photo two was from one of several special visits to Lake Geneva; Neil, Patty and I acted like little kids for several days running.

Anyway, I cropped out pieces of several images that caught my eye, and threw them together in this array. Please don't take offense if you don't see yourself here; I will likely make similar collages several times in the future, when I have the opportunity to further immerse myself in our library of snaps.

To see the image a bit more clearly, click on any spot on the picture and a larger version will appear.

Love,

Brian

A busy Saturday

Hi everyone:

I'm wiped out. As planned, we did a massive rearranging of rooms, which took all day and part of the evening. Naturally, this did not happen without a fair amount of aggravation; kids just manufacture excuses to fight, sometimes. Further complicating things was our decision to deviate somewhat from our original plan. Patrick is now in the basement, and Connor and Kelly are in separate rooms; when Devin and Colin visit, we have a bed downstairs for Devin, and Colin will join Connor. We hope all of this works out.

Patty was again a bit rough through the early part of the day, but felt better (albeit tired) as the day progressed. We're just taking things easy tonight, and will continue with some minor domestic challenges tomorrow.

Love,
Brian

Family Friday

Hi everyone:

Tonight was a family fun night...sort of. The five of us saw a matinee of Bridge to Terabithia. Both Patty and I were thrilled with the movie, and are pretty sure the kids are fans as well. I found the hall scene with Jesse and the teacher deeply affecting, in both the book and the movie; Connor even took a moment to tease me about my reaction. Kids...can't live with them, can't drop them off on a remote country road and race away.

After gorging on popcorn and candy, nobody was feeling especially hungry, so we decided that a family meal could be moved to a later date. After making this decision, there seemed to be less reason to continue the evening as a family event, particularly since the kids were chomping at the bit to make other plans. PJ is at a second movie and Connor is sleeping over at his friend Alec's house; only Kelly is home with us this evening.

Tomorrow, our plan is to do some ambitious rearranging of kids and furniture. The bunk beds in PJ's room will be taken apart and reassembled in the basement. The bunks in Kelly's and Connor's room will be broken down and restored in PJ's room, which PJ and Connor will now share. We will assemble a twin bed (from the basement) in Kelly's room, of which she will become the sole occupant.

When Devin and Colin stay for stretches, we'll have to get creative; the five kids often travel in a pack when they're all together, so they may well slumber en masse in the basement. Our ultimate plan is to finish all or part of our basement, anyway, so that we can accomodate the space needs of growing kids. Actually, one of our plans is to win the HGTV Dream Home, which will solve this problem in a grand fashion; until then, it's roll-up-our-sleeves time.

More soon...

Love,
Brian

P.S. Patty had another rough morning, but a decent later day, thus far.

Love & respect (a personal note)

Rocky -- thank you for your comments the past couple of days; every time we catch up, doesn't it seem like the whole world has changed again? When you have a chance, please contact us directly at omara_croft@yahoo.com.

Love,
Brian & Patty

A documentary worth checking out

Hi everyone:

Patty and I just finished a two-hour documentary, aired on PBS, called Hidden Epidemic: Heart Disease. Although we felt a bit rattled at how much of the information we already knew, we also enjoyed a few "aha!" moments and found the program worth recommending. I was fascinated by the science (and the cool graphics), and at the same time felt strangely anxious. We paused the show every 10 minutes for 15 minutes of conversation, so it's taken us two nights to get through the show.

As we watched, I found myself reflecting again (would that be re-reflecting?) on how many risk factors I still have, and puzzling as to why I haven't taken real steps to protect myself. I suppose this is the same sort of question that should probably occur to cardiologists who are over 350 lbs; we've worked with one of those. It's just striking me as ironic that we can see concrete evidence that things like heart attacks, strokes and cancer can and do happen, and yet it's still so easy to settle into a "This could never happen to me" mentality. Weird. Sorry...I'm sounding like a reformed smoker here, although I'm really much more curious than condemning.

If you're interested, and can get to a DVR before you go to bed tonight, the show is on again on WTTW at 2:30 am Friday. There's also a web site, here.

Love,
Brian

P.S. Patty started her day feeling rough yet again, but as I write this is laughing heartily at an episode of Will & Grace (insert "bad sitcom" joke here.)

Five Years

Hi everyone:

Five years ago today, I married the most amazing person I had ever (and have ever) met. We both knew then, and still know now, that we belonged together. Every obstacle we have faced has only made us trust each other more; every hardship has only drawn us closer together.

It's not supposed to work this way, but we act as much like a newly married couple today as we were on the night this photo was taken. (Incidentally, I threw up about three hours after this picture was snapped, and had to be carried to bed, but that's a story in itself.)

Patty and I have had to fall back on a great many people for support during this long period of compromised health. Friends, family, colleagues, churches, schools, artists, businesses and even strangers have come through with wave after wave of kindness and generosity. Please know that we could not have managed this chaos without you, and that we are deeply grateful for everything.

We have wonderful children. Devin is a beautiful dreamer, and a great companion for a walk. PJ is often unsettling in his sharpness and wit. Colin can almost always crack me up, even when I'm inclined not to. Kelly is the daughter I thought I'd never have; that would be reason enough to celebrate, but I think I most admire how natural she is around young kids. Connor is, to me, Little Man, with a huge, hurting heart I wish I could better protect right now. As so-called "blended" families go, I think ours is a pretty solid one.

Patty and I have made mistakes along the way. In retrospect, I see that we were at times naive, selfish, provocative, hurtful and insensitive to others. There are situations that I wish I could rewind and edit, but of course I cannot. I continue to hope that most wounds can ultimately be healed.

I want so much for Patty to make a full recovery from her illness. I need her companionship, her intellect, her logic, and most of all her presence in my life. I have never seen a parent I admire more, although I've witnessed several very good examples. I think she is an amazing teacher. I'm not a big believer in fate or superstition, and my faith is more than a little shaky, but I hope that whatever forces are out there will band together to pull Patty through. I cannot apologize for feeling selfish in this regard -- as The Pogues would say, "I've built my dreams around (her.)"

More than anything, I want to be able to celebrate a 6th, 10th, 2oth, 25th and 50th anniversary with Patty. She is my best friend, and a great wife. I know that at each milestone I will be a better person for having Patty in my life.

Love,
Brian

Still struggling

Hi everyone:

Patty had a night of very little sleep, and again awakened feeling terrible. She battled nausea for much of the day (while I was on the road at a client site.) It seems like Patty fares a little better in the evenings, although she still has a dull headache as I write this. It seems she's rarely at 100% anymore.

I suppose this shouldn't fall into the category of "good news", but I couldn't help feeling some relief when I learned today that our local Walgreens manager, who was, for lack of a better term, a jerk, had left. Patty has so many prescriptions in the works at any given time that having an inflexible (even unfair) pharmacist is a burden hard to bear.

If I think of anything else, I'll write again.

Love,
Brian

P.S. Half Nelson was a good flick; uncomfortable, but good.

A little better

Hi everyone:

This is overkill, to be sure, but I wanted to drop a quick note to mention that Patty has improved slightly over the course of this evening. I realize that this level of detail is probably only relevant to those who live with Patty, but I have found myself excited at the transformation. I am so accustomed to having activity- and conversation-rich days and evenings with Patty that their absence makes me feel, for lack of a better word, lost.

With luck, perhaps this improvement in health will spill over into tomorrow. Our patient has not been having a great time.

That's all I'll write for now, as I want to get back to my evening with the revitalized (knock on wood) version of Patty. We're watching Half Nelson -- we'll get back to you with our review.

Love,
Brian

The beat goes on

Hi everyone:

As reported, yesterday was a rough day for Patty; sadly, today has just brought more of the same. Her nausea is pretty intense, as is her headache and fatigue. Aside from the occasional foray into the kitchen or bathroom, Patty is largely bedridden. We're really unclear about how long she might expect symptoms of this severity, although doctors guessed she might be experiencing some side effects for a couple of weeks. Based on how physically and emotionally fragile Patty seems right now, I'm really hoping the doctors' estimates are on the liberal side.

To compound matters, the severe weather has resulted in a snow day; although to the kids this is wonderful news, to Patty the comings-and-goings of children (ours and others') has provided an added level of chaos. What's more, I wasn't able to run interference as effectively as I would have liked, because I was running an errand with/for Patrick. Fortunately, Patty has been out like a light for much of the past hour, so she's being granted at least a brief respite from her symptoms.

I'll write again when there's something new to share.

Love,
Brian

Miserable Monday

Hi everyone:

Patty is having a terrible time battling the after-effects of her Rituxan / Cytoxan treatment. All day, she has felt nauseous and fatigued, her hands shake constantly, and her head has been aching; really, she seems like a faint shadow of her full self. Our hope is that these symptoms will subside soon, because this really doesn't seem like "living."

Oddly enough, Patty has not identified any odd heart rhythms today--I guess that's the silver lining around an otherwise terrible day for our patient.

I worry about the longer-term implications of failure in reducing the antibodies. If that weren't enough, I also worry about the implications of success in reducing antibodies, because I'm presuming that many of the drugs used to bring antibodies down will also need to be continued to prevent post-transplant rejection. I'm sure I've raised this concern before, so I apologize if I'm flogging a dead horse; it's just another of those mysteries for which I wish we had answers.

Love,

Brian

A pic from today

Hi everyone:



Here's a photo I snapped just a moment ago; there, now you're as up-to-date as I am about how she's looking today. Go ahead, poke her with a stick...

Love,
Brian

Snowy Sunday

Hi everyone:

I'm sorry for not writing yesterday. Neil and I went out for a couple of drinks yesterday evening, but otherwise our day was pretty low-key. Of course, there was the bonfire Neil and I started outside in the bitter cold, and my idea of adding a temporary snowbank in our kitchen for Patty to find when she awakened from a nap. Neil was the voice of reason and pooh-poohed the snowbank idea; Patty said that we made the right choice.

Today, Patty is not feeling very well. Since her IV treatment on Friday, she has had an upset stomach and has noticed that most foods taste metallic or otherwise spoiled. She continues to have sporadic heart rhythm irregularities. Of late, she has found them more uncomfortable and longer in duration, and thus more unsettling. I've asked Patty to send in an interrogation from her ICD (via phone), so that doctors can tell us if these blips and bumps are cause for special concern.

That's it for now.

Love,

Brian

At home and well

Hi everyone:

Patty is back home--and surprisingly energetic--after her day of intravenous drug administration. Of course, Patty once again flew in the face of convention on the side effect front. Typically, those who have adverse reactions to Rituxan show symptoms immediately; Patty, though, seemed totally fine until about three hours into a four-hour course. At that time, she was suddenly in tears from a crushing headache and rigors (shaking). The nurses gave her a shot of Demerol, which quickly made her feel much better. All in all, Patty came through this round with flying colors. Now, if her body could just start behaving in a way conducive to transplant, we'll be walking on clouds.

After leaving the hospital, we met Neil at the train station; he is joining us for the weekend. I find that sitting up all night with Neil at least once every month is cathartic; our conversations either help me put things in perspective or push them far from mind. One moment, our conversations are philosphical; the next, they become over-the-top vulgar (you have no idea.) What's more, Patty always ends up laughing for much of the time Neil is visiting, and that is the very best medicine for both of us.

This evening, we met up with Steve at PJ's speech performance, and were thrilled when PJ was pulled back onstage for special acknowledgment of his directing skills. We were already proud; this just gave us another reason to beam. I continue to be surprised at just how much parenting is a learning process, with all the associated As and Ds (and even some Fs.) In an almost uncanny fashion, kids seem to come through when you're most worried that you're dropping the ball.

We're now back at home, relaxing and solving the world's mysteries with Neil. Life, at least at this moment, seems really good.

Love,
Brian

Family night

Hi everyone:

I forgot to mention, in my last post, that we were heading into another family fun night. Tonight, Kelly was our leader. We had a smorgasbord of appetizers (or, as Patty offered, a "happy hour dinner"), and then watched the animated film Open Season. We have a rule--somewhat loosely observed--that bickering is verboten during these evenings; when the rules are mostly followed, we end up having nice memories of each of these nights. I suppose there's something sad to the reality that simple family time needs to be scheduled and planned; and yet, once we get into the swing of our evenings, they really seem incredibly natural and important.

As of this writing, Patty has had three episodes of irregular heart rhythms this evening; I really don't know if these are cause for concern. For some reason, I am uneasy about tomorrow--I know I'm selfish, but I want all surprises from this point forward to be pleasant ones. Patty actually seems a bit excited, because things seem to be moving along at last. I really hope this go-round is the one we mark as the positive turning point.

Love,
Brian

P.S. I think I sometimes sound like Woody Allen; it's a good thing I look so much like Brad Pitt.

Finally!!!

Hi everyone:

Edward Hospital called us late this afternoon to let us know that they will be ready to start Patty's next round of drug treatment at 8:30 am tomorrow. So, after weeks of waiting, and with little fanfare, the final details appear to have come together pretty quickly.

In what I'm sure is not the last irony we'll experience, treatment will take place at Edward's Cancer Center, even though Patty is under Cardiology's wing. If Patty tolerates the drugs well, she may be able to receive future rounds of the medicine from home.

To be honest, both Patty and I are feeling some jitters about this next round of treatment. We've heard that the two drugs in the mix are "generally well tolerated." This should provide some comfort; however, we heard similar claims made for CellCept, which really did a number on Patty, and for several other drugs that made Patty's blood pressure plummet.

One of the drugs tomorrow is Cytoxan, a chemotherapy drug that Patty has taken in the past; this time, she'll receive it intravenously instead of as a pill. The common side effects are nausea, vomiting and gradual hair loss. The other drug, Rituxan, is called a monoclonal antibody therapy. It can cause headache, flushing, dizziness, nausea and rigors. What's more, I am of course fretting about a rare, potentially fatal side effect of Rituxan. Please don't let my anxiety rub off on you; I thought I was going to lose Patty to the blood infection earlier this winter, so I'm predisposed to be a worrywort.

I will try to post an entry tomorrow evening, after Patty returns home. Let's hope our patient finds a way to overcome the antibodies issue this time, because our guess is that there aren't many more new ideas out there.

Love,

Brian

Status quo (sigh)

Hi everyone:

Today was yet another day of our holding pattern, without a word of fresh information. It seems like forever since we've actually taken a step forward.

When Patty was first listed for a transplant, we were expecting a wait of just a few weeks; we're more than eight months into this now, and still no closer to the desired outcome. It's been so long, in fact, that I think I would collapse from shock if we received the call about a matching donor. Things have slowed down so much that I'm surprised we have kept a loyal readership. Thank you...it means more than you may think.

As mentioned, Patty discontinued her use of Imdur (a drug to help with breathing at night), and her headaches retreated to their normal level. She's doing pretty well today.

Love,
Brian

Please, please DON'T take my picture!!!

Hi everyone:

I realize the photo here makes Patty appear grief-stricken, or in profound pain from both ears; however, all it really captures is my wife's boundless enthusiasm for the idea of having her photo snapped. The hands are helping to hold the bed-head from erupting from the sides of Patty's head.

Patty has been suffering a headache of varying intensity all day today. We suspect that Imdur is at least partially responsible, so Patty is going to temporarily discontinue her use of the drug to see if the headaches dissipate. Of course, this may ultimately mean Patty won't sleep as well at night, but I guess we need to look for the lesser of two (or more) evils.

We are STILL waiting for the go-ahead for chemo from doctors and the insurance company. I'm starting to fear they will never approve the treatments. Of course, while we wait, Patty seems to be having more and more frequent heart rhythm irregularities--some are just odd beats here and there, while others create symptoms similar to those she felt before she received an ICD shock. The latter are the most distressing.

Increasingly, I've been finding my emotions see-sawing between a strange, detached numbness and an intense, almost overwhelming anxiety; both forms really bother me. When Patty seems healthy, I can almost convince myself that all the doctors are wrong and that she will live a full, unrestricted life without major medical interventions. Seconds later, I find myself terrified at the prospect of facing whatever the future may hold, because none of it will be what we would have chosen. Fortunately, I don't spend too much time on either side. For the most part, I just admire Patty's ability to roll with whatever comes her way.

I spent a good portion of the day preparing a marketing postcard for our business, while Patty relaxed and snoozed. Tonight, Patty is watching American Idol with the kids; when I finish here, I suppose I'll grab my book and join them.

Love,
Brian

Long night, rough day

Hi everyone:

Patty had a less-than-stellar morning, in large part because she had a very poor night of sleep. One of the things we are learning about having a sick adult in the home is that, even when things seem to be fine, emotions typically kept just under the surface seem to emerge in an unpredictable fashion. Last night, Connor could not sleep, and ultimately joined us for the night; unfortunately, he didn't make it easy for Patty to get comfortable. As a consequence of the fatigue, Patty battled a pretty tough headache for much of the day. She seems much better this evening.

Nothing else worth reporting transpired today. This waiting is maddening...

Love,
Brian

P.S. Well, the Bears didn't get it done. Fortunately, the White Sox season is on the horizon.

A quick one

Hi everyone:

I have errands to run--and therefore need to keep this brief--but I didn't want to leave loose ends untied from last night's post. Cliffhangers are great in fiction, but less fun in real life. Patty continues to experience breathing challenges, although not of the severity of yesterday. I'm hoping this was just a blip, and not a sign of things to come.

Love,
Brian

Concerns...and kudos

Hi everyone:

This evening, Patty has had sporadic but fairly significant shortness of breath, along with accelerated resting heart rates (roughly 110 beats per minute...much higher than the typical 70s.) Of course, these symptoms are always unsettling, as they provide a reminder that no matter how well Patty seems to be doing, there will always be scares. She continues to be experiencing symptoms as I write this -- they are probably nothing to fret about, but I really want things to go back to "normal".

Kathleen and Cindy have visited this weekend. We've mostly been slugs, although it would be hard to be much more with the temperature outside continuing its brutal streak. Tomorrow, our plan is to join our neighbors Denise and Kevin for the Super Bowl. As was the case last week, the "experts" of the sports world are, for the most part, predicting a romp of the Bears. Idiots.

PJ participated in a speech meet today and captured first prize in both the School and Team categories. This means he (and they) will compete in regional competition in the near future, and could ultimately vie for state. When I heard the news, I had to leave the room briefly because the smoke from the fire was making my eyes water. We are so proud right now.

I must run...I want to keep an eye on the patient...

Love,
Brian

Charades champ

Hi everyone:

Family fun night doesn't always go off without some heated competition. Here, Connor goes the extra mile to help his teammates emerge victorious from the "who am I" phase.



Did anyone else guess "Damien Thorne"?

Love,
Brian

P.S. Okay, I pretty much stole this joke from one of Kevin's earlier comments, but the photo makes it fresh...and a little frightening.

Return of family fun night

Hi everyone:

In spite of the lack of enthusiasm reflected in this photograph, our family fun night was again a success. Connor, our leader for this round, opted for burgers and fries for dinner, and a game of Cranium for our activity. For the latter, we separated teams along gender lines; the contest was close, but the males ultimately prevailed. We all agreed that the most difficult element in the game was trying to draw with your eyes closed--although my charades to demonstrate magnetism could easily claim an "exercise-in-futility" prize.

Patty's home nurse Mariska drew additional vials of blood today, at the request of the University of Chicago Hospital. Our understanding is that these many recent samples are being used to see if Patty's unusual situation can be tied to some obscure autoimmune condition; I'm a bit skeptical, but I suppose it's worth a shot. A question I want to ask is this: will knowing the answers to these questions give us a better sense of direction for Patty's future care?

Patty has had a pretty good day today. She did sleep for a stretch after lunch today (after two nap-free afternoons Tuesday and Wednesday), but otherwise held up pretty well today. We've both been reading for much of our spare time; Patty has been working through Scott Turow's Reversible Errors, and I just finished Sacrament by Clive Barker. I'll say goodbye to you for now, so that Patty and I can settle into a DVD before calling it a night.

Love,
Brian

Status quo

Hi everyone:

Once again, I'm finding myself with little of consequence to share. This evening, Patty did have a rather unsettling 10-second stretch in which her heart seemed to be racing; other than that, though, it's been status quo. I spent much of the day chasing new business--with some success, I'm happy to share--while Patty kept her nose buried in Reversible Errors, a Scott Turow book.

PJ and I spent some time this evening doing night driving practice; he did well, and I of course continued to be nervous. I suspect this will be the case for the foreseeable future, regardless of how well he does.

Patty called to inquire about the delay in getting approval for the next round of chemo drugs. She was told that the decision was still pending, and that it may remain that way for a while, because we're venturing even further into territory that insurance companies regard as "experimental" (read: easy to deny.) From what I've been able to glean from online sources, one round of rituxan is about $9,000. I really, really, really hope that this drug is the answer, because it seems like Patty has tried so many things, and endured a lot of discomfort, with little to show for it.

Love,
Brian

One from Patty

Hi all:

It's Patty this time. Brian has told me that since I'm not providing really juicy material to share these days, I should at least pop in and say hello. Brian encourages me to write more often, but I like to read his entries every day, so I don't want to give him too many days off.

Are we the only household stuck in the winter doldrums? My guess is no. Over the last week or so, it just feels like we've slipped into a slump. Each day, it seems to get colder and colder, which has effectively eliminated my ability to bundle up enough for a walk. When I'm at my most blue, it seems like each day is simply bleeding into the next, with little other than irritations (e.g, misunderstandings with pharmacists and school nurses) to stand out as milestones. For so much of my time, it seems, I'm painfully aware that I'm just waiting and waiting, and wondering and wondering, like an impatient, confused and bored laboratory mouse. I try not to be too bleak in my thinking, but I feel discouraged when I can't commit to any activity even in the near future, particularly if it involves travel.

How's that for a gloomy outlook? On the positive side, we continue to be blessed by the caring of our friends and family, and sometimes even strangers. For that, I am and will always be grateful. In just a couple of weeks, Brian and I will have been married for five years; it seems like the time has moved so fast, even though so many things have transpired in that time. I hope we have many, many more years together. The kids are doing great. Sue's visit was a delight. Each day, I am enjoying my Christmas present -- the flooring a friend and Brian installed in our family room (for both aesthetic and health reasons.) Now, if we could just get these antibodies down, I'll really be enthusiastic.

Today, I'm feeling pretty good. In fact, most days lately I've been feeling pretty good -- tired a lot, but good. Please stay in touch. I love to read comments, and actually get excited when I see there are some there. Sometimes, they turn out to be ads someone has hacked into the blog, so I get crabby because of the letdown. Let's tip our hat to Kevin, who has cracked us up several times in the last couple of weeks with his comments. If some of you would like to keep in touch, but don't feel comfortable posting a public comment, please send us an email, at omara_croft@yahoo.com. I'll try to get back to anyone who writes.

Love,
Patty

Impatience, illness, fear and violence (all on Sunday)

Hi everyone:

We are still awaiting responses from doctors and insurers regarding Patty's next round of chemotherapy, and again trying to get her regular prescriptions sorted out (it's always something.) We're fortunate that Patty seems to be faring pretty well of late, because she could get much worse while the powers-that-be sort out the administrative nonsense.

Kelly has been felled by some sort of bug since Friday night. Night and day, she has been struggling to keep her stomach down, and enjoying little success. Mercifully, the only other person who seems to be showing symptoms is me, and I haven't been nearly as incapacitated. Kelly is home today; we're hoping she'll recover enough to go back to school tomorrow.

PJ recently acquired his learner's permit, so I asked him to drive me to and from the library yesterday. He did quite well, and made few mistakes for an inexperienced driver; even so, I swear that the impressions of my fingers are permanently gouged into the armrest. As we were traveling I recalled, with some fondness and some newfound empathy, that my Dad took me out for driving practice 24 years ago; I wonder if he's recovered yet.

As mentioned, Patty hasn't been ailing as much as in earlier times. This is not to say, though, that she's been given a reprieve from discomfort. Yesterday, as I tossed the phone on the bed, I scored a direct hit on the top of Patty's left foot. Later, as I reached to put my arm around her for a hug, I accidentally punched her in the bridge of the nose. This lady never catches a break.

Love,

Brian

Waiting and waiting

Hi everyone:

We are still awaiting substantive information from doctors; until then, we just wait and wait. The high points of this day included aborting a walk within a minute because of the bitter wind (and because of Patty's subsequent inability to breathe comfortably), and my preparation of an enormous pot of jambalaya. Patty took a very long nap in the early evening while I watched the Toronto Maple Leafs game. As I write this, we're about to start into a yet-to-be-determined movie.

Incidentally, if you've never seen the foreign ghost story The Devil's Backbone, by Guillermo Del Toro, the director of Pan's Labyrinth, give it a try. It doesn't hammer you over the head with cheap scares like most horror flicks, but instead slowly introduces an overarching sense of dread. More movies should respect the intelligence of the audience, as this film does. Can you tell I'm a fan of this director's work? Can you also tell that I'm scrambling to post something of substance in this space?

Stay tuned...the excitement drought never seems to endure for long. Let's just hope the next real news is something optimistic in nature. A reduction in antibodies? A perfect match on a heart?

Love,
Brian

P.S. Last night, we surpassed 8,000 visits to the blog since late July, 2006; thanks for keeping in the loop.

A whole lot of nothing (again)

Hi everyone:

Today was another day with little of consequence to share. For the most part, Patty seemed pretty strong today, and was pleased with herself for braving the cold for a third consecutive day (to keep an exercise streak alive.) We walked together for 30 minutes, and then I forged on for another half hour. Patty was breathless at points, mostly because the snow provided a shifting surface that wasn't easy to negotiate.

Patty settled into a nap in the late afternoon. At some point, she was awakened by an irregular heartbeat that continued for about 30 seconds, and which gave her a scare. Hopefully, this was just a blip and not anything meaningful. I really wish the doctors and insurance carriers would get their ducks in a row, though, because the wait seems like we're tempting fate.

Love,
Brian

Yawwwwnnnnn!!!

Hi everyone:

Today was just another ordinary day. We went for a longer walk, but otherwise were homebodies for much of the day. I worked at the computer, and Patty worked around the house. She seemed to be pretty energetic for much of the day; we'll take as many such days as we can get.

Love,
Brian

Grabbing some fresh air

Hi everyone:

As the picture illustrates, Patty and I went out for a walk this morning. We haven't been getting outside as often as in the past, but have made a resolution to push things a little bit, since we don't know how long Patty may be waiting for a heart. For my part, anyone who saw me in January of both 2006 and 2007 knows why I need to get off my butt more often.

The cold air doesn't always make such efforts easy for Patty, so she paces herself and we walk in one-block loops so she can cut things short as needed. Today, Patty was able to go for 20 minutes before needing to pull the plug. I was of course happy to snap a photo outdoors, since the quality is generally better; besides, pictures like this somehow seem more optimistic (if that makes any sense.)

Today, the ache in Patty's side seems to be better than yesterday, so perhaps there's something to the "pulled muscle" diagnosis after all.

Love,
Brian

A call from Edward Hospital

Hi everyone:

There's not much to report today, other than that Patty spoke briefly with Dr. Costanzo this afternoon. Dr. Costanzo gave Patty the name of the head of oncology at Edward, who should be contacting us within the next day to make arrangements for Patty to begin her rituxan/cytoxan treatments. Patty is a bit frustrated with the slow pace in scheduling these actions, in part because.

Patty continues to be bothered by pains in her right side, which are worse when she coughs or laughs. Dr. Costanzo guessed that the likely cause is a muscle pull, although, to be fair, it's not easy to diagnose a problem over the phone. The doc suggested that if the pain persists, Patty should be back in touch. Of course, I'm worrying that there's something more dire afoot.

Kathleen is visiting tonight, so I need to sign off and be a more gracious host.

Love,
Brian

315 and counting

Hi everyone:

Tonight, and for the first time, I noticed that there is a counter within the screens I use to post these blog entries. Since May of last year, I have posted 315 messages in this space. A great many of these entries have offered little of substance, to be sure; just the typical comings and goings of a family of 5-7, depending on the day. I've even felt a need to apologize, at times, for offering little of substance--and yet, when I quickly scan down the screen, I am reminded of just how crazy this ride has been at times. I'm reminded of how quickly you can be brought right back to a deeply emotional moment (happy, sad or otherwise) simply by reviewing an image. I am reminded of how people can surprise you in the most magical fashion, especially when you most need that surprise. And I am reminded that, regardless of how painful or frustrating certain moments can be, there is just so much to celebrate in this world.*

After a very pleasant few days together, we dropped Aunt Sue at the Metra station in Aurora late this afternoon. During Sue's stay, she made Patty and I laugh uproariously on more than one occasion. The next time you see Sue, be sure to ask her about geese formations, vacuuming for fitness and how to best manage the issue of teen drivers; I'm smiling from ear to ear as I write this.

As for Patty, she has still been experiencing headaches from the new medication, has continued to be bothered by stomach cramps, and can't seem to shake the increasing discomfort just under her rib cage (the latest mystery.) The kids still seem to be trying to chase away the last vestiges of colds. I have been ailing from bizarre stomach/back/neck/arm pains, enough that I think I'll finally concede and seek medical attention. We've been quite a haggard bunch of late.

Love,
Brian

* Okay, I have to admit that the Bears' win over New Orleans is the strongest example that immediately comes to mind, but there are of course others!

An arrival...and The Departed

Hi everyone:

Patty and I picked up Aunt Sue at the train station yesterday afternoon. After getting settled at home, we headed out for dinner at Luigi's House, and then saw Scorsese's latest, The Departed, at the Cantera 30 in Warrenville. To my surprise, I wasn't particularly impressed with the film, in spite of the good reviews it received. Sue did not care for it, either. Patty liked it, with some reservations. After the movie, we returned home and headed upstairs shortly after 11pm.

This morning, Patty is struggling with a headache brought on by a new vasodillator that should help her breathing (and, by extension, her sleeping) at night. Our hope is that she can manage the headache, so that she can reap the benefits of taking the drug without too much downside.

Our plan for the day is to start into some sort of jewelry/beading project, and then watch the Bears game (or part of it, if things turn ugly.) Go Bears! Bring on the snow!

Love,
Brian

Further adventures of the walking enigma

Hi everyone:

My apologies for not writing yesterday; we didn't get home from University of Chicago Hospital until late in the afternoon, and a nap beckoned upon our arrival home.

As Patty and I left the parking garage of the hospital yesterday, I expressed my opinion that, through no fault of anyone involved, each new piece of information makes it seem like we truly know less and less. I sometimes imagine that Patty, those of us who love her and her many doctors are all trapped in an Escher labyrinth, and that we will continue to go in circles until everyone is just worn out.

For example, the rheumatologist with whom we met yesterday noted that Patty somehow manages to manufacture antibodies against her own body even if Cytoxan is present; typically, these drugs would make such an event improbable. He also shared that although Patty's bloodwork pointed to Hashimoto's thyroiditis as a diagnosis, the numbers could also mean little, because many women may have these markers at some point in their lives. He said that the measures make a diagnosis of lupus unlikely (in spite of an earlier, positive diagnosis), but almost certainly point to some form of autoimmune disease that he's thus far been unable to identify. Soon, Patty's blood will be sent to a specialty lab at the Mayo Clinic to be checked for some other marker that could have meaning; by the point the doctor offered this information, my head was fairly spinning, so I didn't keep good notes.

If all of this weren't perplexing enough, we also learned that Patty is the only person the rheumatology team was ever encountered who showed evidence of autoimmune disease but who suffered a heart attack affecting only one major artery. Hey, ain't it grand to be number one?

On the flip side, the rheumatologist predicted that the combination of Rituxan and Cytoxan should certainly bring down Patty's PRA, because the two drugs attack the two types of antibodies (T and B cells), and reduction in one type of cells apparently inspires a reduction in the other. I'm going to contain my optimism until I see some real data to suggest success, especially given the fact Patty should have seen a real reduction from Cytoxan alone. I really hope, though, that this time we'll see some movement in the numbers, because I can tell Patty is frustrated with the lack of progress (as am I.)

Our visit with the neurologist was anticlimactic and, in our opinion, a waste of time. For some reason, the transplant team keeps putting Patty in front of neurologists, who have yet to find one iota of evidence that neurological issues are a factor. We probably shouldn't second guess the experts so freely, but we find it exasperating when the same things are tried over and over without yielding any information of value.

Today, Patty's stomach is upset, her lower abdomen is cramping and she's fatigued because she didn't sleep well last night. Her breathing continues to be a challenge. Having said all of this, she continues to maintain good spirits, which makes me admire her more and more each day.

Love,
Brian

Aches and pains

Hi everyone:

Today was another of those "nothing" days, at least in terms of news. Tomorrow, Patty has appointments at the University of Chicago Hospital, which means we'll be on the road fairly early in the morning.

Patty has been feeling quite tired through much of the day today, and has been experiencing some odd aches and pains through her midsection. Of course, we rarely know what is meaningful and what is not; let's keep our fingers crossed that these are just run-of-the-mill aches. We'll plan for a low-key evening tonight and hope for a better tomorrow.

Love,
Brian

This is spinal tap

Hi everyone:

One of Patty's UCH doctors called this evening. As early as next week, doctors are planning to administer both rituximab and cytoxan intravenously, in the hopes of reducing Patty's antibodies. I'm pretty nervous about the side effects, but since nothing else seems to be working, I guess it's worth a shot. Doctors will premedicate Patty to keep her relaxed (or asleep)for the period during which she's receiving the drugs. We're hoping this procedure will be accommodated at Edward, so that we don't have to do as much driving.

Also, the doctor mentioned that the neurologists may opt to do a lumbar puncture as part of their investigation into Patty's headaches. As I mentioned previously, we're a bit perplexed as to why the docs keep including this in their considerations, since all the tests thus far have been entirely normal, but I'd hate to suggest that Patty refuse something and then find out it was significant.

Let's hope this next round of interventions brings the PRA numbers down. Good night.

Love,
Brian

Moving toward some answers (hopefully)

Hi everyone:

Patty's appointment with Dr. Costanzo this morning yielded few new answers, but ended with some optimism that we may soon gain some insights. Dr. Costanzo was amazed that we had not yet heard from UCH, in spite of promises she had received during conversations with the transplant team last week. She called again in our presence, and secured a commitment that we will receive a call in the early evening. We don't know if more insights will come from that call or not; if we learn anything fresh, I'll be sure to share it here.

Dr. Costanzo asked that Patty "tough out" her breathing challenges rather than go back on milrinone. The doctor is concerned that the risks of using the drug currently outweigh the benefits. Instead, Dr. Costanzo has prescribed a drug that should help Patty breathe with less difficulty during the night (Patty sometimes needs to sleep propped up because she cannot easily breathe.)

As we've mentioned previously, the plan is to try the drug rituximab as the next possible solution for reducing antibodies; we don't know yet when this will start. Also, the lupus / Hashimoto's issues need to be further explored, starting with a follow-up appointment with the rheumatologist and a blood draw at UCH this Friday. A new item on the list is another discussion with a neurologist about Patty's headaches (also this Friday.) To be frank, we think this is a redundant step and a waste of time.

More soon...

Love,
Brian

Photos from PJ's birthday

The remodeled cake



Kelsey & the Birthday Boy

Sixteen candles...

Hi everyone:

Patrick (PJ) turned 16 today...Happy Birthday, son. We celebrated the occasion last night. Neil continued his visit (he leaves tomorrow), and PJ's girlfriend Kelsey joined us for dinner and cake. PJ blew out the candles on the cake from my surprise party of the other night--the cake we completely forgot to serve. We simply scratched off "Brian", added "PJ", changed some candles, and that was that. The cake is so large that there will likely be leftovers for several days.

We've really enjoyed Neil's visit, as is always the case. We do a lot of laughing, often to the extent that one or more of us is unable to speak for laughter. We seem to also do a lot of cooking. Today, Neil and I have been working on a shepherd's pie, using some leftover beef from our dinner last night. It's seldom an elegant dish, but it's always been one of my favorites. Patty is even a good sport about the addition of many peas to the dish, even though she detests peas.

I'm still on a high about the party of the other night, and still shaking my head that so many people were able to visit. I think I'd like to celebrate all of my birthdays in this fashion.

Tomorrow, Patty has an appointment with Dr. Costanzo, and on Friday she has a follow-up with a rheumatologist at UCH. Hopefully, we will finally get some answers about the future direction for Patty. To be honest, I'm pretty exasperated about the long delays between the time we ask questions and the time we get real answers.

Aunt Sue will be visiting from Saturday to Monday. We're hoping to take in a movie (I'm voting for King of Scotland), and perhaps do something creative under the tutelage of the art teacher here. Visits with Sue have become a regular and special tradition, so we're looking forward to a chance for a longer visit.

To the list of those for whom you're keeping best wishes, please think of Evie Murray, the three-year-old daughter of our friend Joey. Joey is Cindy's brother. Evie has been struggling with respiratory problems for several days, and could use some good fortune right now.

Love,
Brian

P.S. The system is not working for photo posting right now; I'll share some pics shortly.