1am, Monday morning

Hi everyone:

It's late. We should probably be in bed, but we're in our "deep philosophical discussion mode, " as Patty describes it, and this tends to inject new life into evenings that might otherwise appear to be winding down.

For some reason, the later evening hours inspire the most creative solutions to problems, and the greatest optimism about quick resolution of said problems.

Funny, though, how quickly that optimism seems to fade if one heads to bed and cannot sleep. I've found that 3am is the worst time to try to take on the world, and also the loneliest. Sometimes, even if good sense would dictate that staying up is unwise, it's hard to let go of the feeling that you're winning the battles, so 1am can stretch into 2am with little fanfare.

I want to get back to my chat with Patty. To be honest, my reason for logging on was to share this photo of my amazing wife -- I snapped it about 15 minutes ago. Patty looks so healthy that, in these optimistic hours of the morning, I can forget about heart attacks, and pacemakers, and transplants, and just remember that I am a very fortunate man.

Love,
Brian

A day late and several dollars short(er)

Hi everyone:

I'm sorry for not posting a message yesterday. We didn't get up until later in the morning, and then I left shortly thereafter to tackle some Christmas shopping. Isn't it amazing how quickly a few items in a shopping cart can add up? Five minutes after I returned from shopping, Cindy and her friend Jim arrived for a visit, and then Don joined us an hour or so later.

We had company the entire evening, so I never had a good chance to sit down and collect my thoughts. So, before anyone worries (or worries any more), Patty is just fine. She did have quite pronounced nausea early yesterday, but seemed to come around as the day progressed.

Today, we are watching the Bears game and then going out to run a couple of errands. We will reacquire the children around dinnertime, and will then likely watch a Christmas movie of questionable merit. That's about it for now. Go Bears!!

Love,
Brian

...And some communication from familiar docs

Hi everyone:

Dr. Costanzo from Edward and a member of the UCH transplant team contacted us in separate calls this afternoon, in response to an earlier call from Patty. We were getting a bit anxious to hear what the future plans might be for Patty, even though we were also hoping doctors wouldn't deem it necessary to be too aggressive going into the holidays. We hadn't heard from the doctors, so Patty gave them a nudge.

Here's what we know:

• Patty's situation will be discussed by the entire rheumatology team at UCH this coming Tuesday. From what we understand, most parties involved are guessing Patty is being plagued by some form of connective tissue disease. Of course, the safer money seems to be on lupus right now, although one doctor said that if a good solution is found to this problem, Patty's case will likely be written up for the medical press.
  
• Doctors still want to keep Patty free of the milrinone over the shorter term, in part to give Patty a mental break, and in part because some of the transplant team feel using milrinone as a long-term solution may have as many cons as pros. Patty will be watched closely to make sure she's not slipping for lack of the medicine.
  
• The UCH doctor said that he believes there is still reason to be optimistic about reducing Patty's antibodies, although he did acknowledge that Patty's levels are higher than in the most comparable case studies they've compiled. He suggested that we not worry, because if worst came to worst, he feels Patty could still be transplanted against positive crossmatch and be able to cope with a fairly extensive drug regimen. Patty is not especially enthusiastic about this prospect (nor am I.)
  

Sorry to revive and re-flog a long-dead horse, but please humor me. You have no idea how awkward and ridiculous it feels to constantly refer to some people involved in Patty's care as "the doctor" or "a member of the transplant team"; if you've been reading this space for a while, you'll know there was a big brouhaha some time ago about the issue of sharing specific, detailed information about Patty's care.

Tonight, Patty and I tackled a Christmas-related errand and grabbed a quick, very unsatisfying dinner. Now we're home and settling in for a bit of TV before hitting the sack; it's been a pretty long day.

Love,
Brian

P.S. I tried to post a picture of Patty from today with this entry; however, once again, Blogger is being fussy. Perhaps later, or tomorrow.

Back to UCH to meet another doc

Hi everyone:

We returned moments ago from UCH, where we met with a rheumatologist hand-picked by the head of Patty's transplant team. This doctor certainly did not talk down to us; in fact, he was so technical in his explanations at times that both Patty and I were struggling to keep pace. After a conversation and a brief examination, Patty was sent for a blood draw (seven vials.) We should hear back about any observations sometime next week.

Other than that, there's not much to report, except to say that we can add this doctor to the list of people who is somewhat perplexed as to why Patty would have had a heart attack to begin with, and a little unsure about how to intepret her symptoms (e.g., soreness.) We are expecting calls this afternoon about future plans for Patty. If you have a chance to check back later, I will try to provide any updates.

Love,
Brian

Busy evening tonight, early start tomorrow

Hi everyone:

We enjoyed another successful--albeit tiring--family fun night this evening. PJ was in charge, and took the lead on much of the food preparation and cooking. An ambitious and largely messy dinner was followed by a screening of Talladega Nights.

Although the movie has a few flaws, it was pretty funny throughout. In fact, at one point, I was laughing so hard that Patty asked PJ to pause the movie until I could compose myself. Even the bonus features were pretty rich with laughs. Patty laughed especially hard at a deleted scene in which Will Farrell is struck in the mouth with a shotglass pitched by a bartender. I'm not sure if I laughed harder at the scene or at Patty's contagious laughter.

Tomorrow morning, Patty has an 8am appointment with a rheumatologist who, we are told, specializes in lupus in heart patients. Hopefully, this might get us closer to some answers about what role lupus may be playing in Patty's struggles. We should be on the road by 6:30am. I'll try to provide an update upon our return.

We're still waiting to hear from the transplant team for direction about what's next for Patty. We had thought we would hear more by now. Perhaps doctors are considering the holiday season and thinking Patty can handle a break from the less pleasant treatments. We don't know.

Everyone else is in bed now. I stayed up to finish cleaning the pots and pans and to make sure I didn't neglect my blogging responsibilities. Now, I'm ready for sleep. Good night.

Love,
Brian

When good hair goes bad

Hi everyone:

Patty and I were debating today about who awakened with the most severe bedhead -- you be the judge. As a result of this conversation, we realized that haircuts may soon be in order. From the photo, I realized that my head is roughly the size of John Merrick's; I guess there's not much I can do about that.

We stepped out for an hour or so this afternoon and tackled some of the shopping for Christmas, although there's still much to do. Patty managed pretty well, although her shortness of breath is pretty apparent much of the time. I'm not sure if I prefer her on the milrinone with more energy or without the milrinone and happy to be free of the pump/bag.

Tonight should be another low-key evening, before a fairly hectic family fun night tomorrow night. Next up on that front? PJ has opted for a cooking lesson (prosciutto-wrapped shrimp with remoulade, chicken parmigiana with pasta) and a movie (mostly likely Talladega Nights.) That's the latest and greatest.

Love,
Brian

A groggy Tuesday

Hi everyone:

At the end of the Bears game last night, Trish stopped over for a visit. We chatted about happy things and sad things, and listened to music (also both happy and sad), and didn't wrap things up for several hours, so we're a bit groggy today.

We were called by the school nurse this morning to pick up Kelly, who was throwing up at school; hopefully, this isn't something that will pass from person to person.

Patty continues to fare pretty well without milrinone. Her breathing is somewhat compromised, and she has been struggling with a pretty strong headache, but being free of the pump makes it all tolerable.

We have no real plans for this evening, other than to perhaps watch another Christmas-themed flick. More soon...

Love,
Brian

Look ma, no tubes!

Doing okay without milrinone

Hi everyone:

Well, it turns out that Patty started her milrinone-free existence a little early. Last night before bedtime, Patty's pump beeped to let her know that her present bag of milrinone had run out. Rather than start a full-week supply that would only be wasted, we made the executive decision to pull the plug a few hours early.

Last night, Patty did have some trouble sleeping flat on her back because of breathing problems and, when we went for a short walk today, she also struggled to keep her breath, particularly when speaking. These symptoms suggest to us that she is not thriving as well without milrinone as she was with it, although our plan is to wait and see what happens for a day or two.

I have been working today on getting my office organized so that I can put in one last big marketing push before the holidays. I have also been working on some problems with one of our PCs. Patty did some light work around the house, and is now relaxing on the sofa. In spite of her increased fatigue, she's pretty happy to be free of the extra backpack that has been a constant companion. In the next hour, we plan to pick up our truck from the high school (repairs complete), and perhaps do some grocery shopping.

Love,
Brian

P.S. While Patty and I were walking today, I noticed the latest entry in the category of "things you don't see everyday" -- leopard-skin pattern thong underpants, size M, nine feet off the ground, in a tree.

Phase two of the milrinone reduction

Hi everyone:

Sometime tomorrow, the plan is to discontinue Patty's milrinone transfusion, at least temporarily. I'm nervous about the effect on Patty, as I was when the dose was halved. With the reduced dose, she seems to have less energy than when she was receiving the full amount. We'll keep you posted about what happens. On the plus side, she won't have to lug around the big bag with the pump, so she'll at least enjoy a modicum of freedom.

Love,
Brian

Patty's fist 2, Patty's face 0

Hi everyone:

Today was a largely uneventful day around our home (not shown.) Patty experienced a somewhat unpleasant situation this morning. I'd like to share the story, but she insisted that I keep it to myself because it's embarrassing. Okay, so here's the story. Patty was trying to put on a rubber sleeve that protects her PICC line from water and, as she was pulling the top part of it into place, she accidentally punched herself in the face...twice. Remember--please keep this story to yourself.

Today was mostly a "couch potato" sort of day. We watched An American Christmas Carol, a favorite from years past, and are soon planning to start The Homecoming, a movie from long before my time (well, pretty much.)

More tomorrow...

Love,
Brian

P.S. I did not have my camera handy when Patty put a beating on herself, so I thought I'd share another picture from Friday night.

Things you don't see everyday

Hi everyone:

After a lazy morning in bed, Patty and I left the hotel early this afternoon, stopped for a quick lunch and returned home to relax by the fireplace. Patty has felt pretty nauseous and tired for much of the day, although as I write this she is mostly just fatigued.

Kevin and Sharon stopped in briefly with Jake, Declan and Brian (Mike's son) after a Christmas tree search near Plainfield. We chatted and watched Dirty Jobs and Reno 911! (both very funny, and very different, shows.)

As our guests were leaving, Jake said, in a matter-of-fact way, "Hey, why is there a torn-up rabbit in front of your house?" Before I could really even absorb the question, I looked to where Jake was pointing and, sure enough, there was what was once a rabbit, covering an area about three feet square. All it would have needed was a statue of sticks to be straight out of The Blair Witch Project. We're presuming a neighborhood cat or dog is responsible...unless somebody is trying to send us a message.

After I had registered enough shock, I went outside with a garbage bag and shovel to clean up the mess. We decided that Patty, in her condition, should not really be handling entrails. But, just to give you an idea what a prima donna she is, when I came into the family room with one of the rabbit's legs for good luck, she actually ran away from my gift. I just don't understand women.

More soon...most likely of a less macabre variety.

Love,
Brian

P.S. I decided against posting pictures of our little "discovery" this afternoon -- you're welcome.

Another magical evening

Hi everyone:

We're back in our hotel room after a pleasant evening out at the Goo Goo Dolls concert at the Chicago Theatre. We were only four rows from the stage so, for the photo we're sharing here, I kept the camera completely free of zoom. We were close enough to read the text on the artists' clothes and instruments.

In addition to the Goo Goo Dolls, we saw Mat Kearney, K.T. Tunstall, and two of the members of O.A.R. If you're not familiar with these other bands, give their music a listen; they are all really very good. Many thanks to David and Rick, who work with the Goo Goo Dolls, for making this happen at no cost to us.

Ultimately, the evening proved to be longer than Patty's endurance. About eight songs into the Goo Goo Dolls' set, I looked over to see how Patty was doing--and noticed she was asleep. At that point, I suggested that perhaps we could finish our evening on a lower-key note in our hotel room, and Patty agreed. It was so nice, though, to see Patty dancing to much of the music; I could watch her do this all night long. As I write this, we are back in our room, Patty has gained a bit of a second wind, and we're happy about a really nice evening out together.

Our hotel room is incredible. For a very, very low rate (what do they say--a price too low to print?), Patty is enjoying a wonderful suite at the W City Center Hotel (thank you, Andrew.) Okay, I'm enjoying it, too--but the goal was to provide Patty with a special night out and, so far, mission accomplished. We had a low-key dinner at the Elephant & Castle pub before the show; we both felt we overate, although I'm now wanting a cheeseburger and Patty is craving--what else--cottage cheese.

I'll sign off for now...we don't get too many opportunities for private time in the city, so I don't want to lose what's left. The wireless Internet connection in this room is pretty inconsistent, so perhaps I'll share more pictures tomorrow when we get home.

Tomorrow will be a less scheduled day, with the itinerary largely dictated by how much energy Patty finds in the tank when she awakens. Even though she is tired, Patty just seems so happy. It's a good thing. Good night.

Love,
Brian

We're outta here

Hi everyone:

As mentioned yesterday, Patty and I have a "date" downtown tonight, so I'm not sure when we'll post our next entry -- perhaps tonight, perhaps tomorrow night, perhaps Sunday sometime. Aside from some mild, sporadic nausea, Patty is feeling pretty strong today, and is excited about a night out. I'm looking forward to it, too; I'll try to snap a photo or two along the way.

Have a great, safe weekend, everyone. That includes you, Rex Grossman -- you've got a big night this coming Monday.

Love,
Brian

P.S. Patty thinks my comments to Bears and Sox players are strange; clearly, she doesn't understand what's REALLY important in life.

Talk about feast or famine

Hi everyone:

It seems like I'm always either shortchanging those who read the blog, by missing a day or by offering only a few words, or I'm prolific in sharing the minutiae of our daily existence. So, if we think of this in terms of feast and famine, it's feast day, folks. I wanted to share a small story with you that I'm sure the kids would refer to as "emo" (overly emotional.) I hope you don't mind when I do this; I've come to think of the blog as a diary of sorts, so I want to preserve as many of these discussions and activities as possible.

After our family night tonight, Patty seemed blue. On the two previous occasions, she seemed very upbeat after we wrapped things up. I asked her what was wrong, and she said that she was feeling emotional; however, she was having trouble identifying specific thoughts that were upsetting her, other than to say that the happiness associated with family night had a bittersweet quality.

Two hours later, through spontaneous tears, she said, "I know what's wrong. It's that I don't want to miss everything. I want to see all the kids grow up. I don't want just what other people tell me I can have. I don't want to have just two years with you, or four, or ten...I want forty." I never know what to say at such times, because I want exactly the same things, and yet we both feel powerless to do more than we're doing to make that possible.

We left our car today with Guy Tiberio, the auto shop teacher at Oswego East. He and his students have been fixing some problems with our truck that we had neglected for one reason or another -- mostly the fear of a major repair that would set us back a small fortune. Guy came back today with an assessment of our vehicle, and things weren't nearly as bad as we thought. Our truck has proven to be a pretty good purchase; it won't last forever, but it is still running pretty well for a vehicle with 110,000 miles. Of course, the generosity of Guy and his students is making things much more affordable than had we taken the truck to a commercial shop. We are grateful to Guy, to the kids, and to everyone at Oswego East. They continue to make Patty feel protected in so many ways.

Tomorrow, Patty and I are going downtown for a concert and an overnight. The tickets were given to us by the Goo Goo Dolls' tour manager (with some help from a contact at their record label), and our accommodations were provided for next-to-nothing by the W Chicago City Center. We're looking forward to a nice date night. So, if we go into "famine" mode in terms of updates, that's why.

Love,
Brian

Family night

Hi everyone:

We've put to rest another successful (and tiring) family night, and have pictures to share. Patty even toughed it out, in spite of her nausea.

Love,
Brian

Connor contributes to the dinner preparation



PJ decorates a gingerbread character



Patty works on iced pretzels



Connor and Kelly work on a gingerbread house



Gingerbread people (Patty's version on top, my superior version beneath)--and iced pretzels

A bit of a slide

Hi everyone:

Patty isn't feeling as well today. She has felt nauseous since she awakened, to the point of dry heaving on two occasions. The swelling doesn't seem as severe, although it is still evident.

We're starting into family night (after a couple of weeks off), so I have to keep this brief for now. For Kelly's night, we'll be making a pasta dinner, and then creating gingerbread houses and chocolate-dipped pretzels.

More soon.

Love,
Brian

A better day

Hi everyone:

Well, I guess I'm a bit too much of a freak. It turns out that Patty is faring pretty well on lower levels of milrinone, at least so far. Today, we were able to work a couple of quick errands into our day, and Patty seemed to hold up pretty well. In fact, we have one more errand to tackle later this afternoon, and Patty thinks she'll be up for coming along. The next step will be to discontinue milrinone, to see what happens--this is scheduled to happen on Monday.

Hey, this is starting to sound like a positive, optimistic blog entry. I like the feel of this.

Love, Brian

P.S. Just a quick reminder to anyone in Oak Park or River Forest. Kevin's public forum for the superintendent position is tonight at 8pm. Details are here.

A minor, late update

Hi everyone:

I'm writing mostly because I just felt like writing again...and felt justified doing so since I'm providing a minor update on Patty's symptoms. In addition to the fatigue, which continues but hasn't been as severe tonight as I had worried it would be, Patty seems to be retaining more water than usual. Both her hands and feet are a little puffy, and her rings are quite tight. Presumably, since milrinone is a vasodilator (that is, it opens blood vessels), reducing the dosage would tend to make one more susceptible to swelling.

The symptom I worried most about, and most expected to see -- shortness of breath -- hasn't really been a problem as yet, although Patty has not been especially active. I'm somewhat encouraged by this, but also remain a bit apprehensive. If Patty's faring pretty well tomorrow, I'll feel like I fretted unnecessarily, as is my wont.

Tonight's Christmas flick was A Holiday Affair, starring Robert Mitchum and a very young Janet Leigh -- two thumbs up from these reviewers.

Sleep well.

Love,
Brian

The jury is still out

Hi everyone:

Patty has gone about 28 hours now on a reduced dose of milrinone. Today, she found herself largely incapable of doing anything other than resting in bed or on the sofa. I suspect the reduction in milrinone is a factor, although it's not uncommon for Patty to have stronger days and weaker days. To me, this seemed like an uncharacteristically weak day, particularly for the post-Cytoxan period.

If Patty is equally weak tomorrow, I'll be even more inclined to blame the decreased dosage. Based on what the doctors have told us, there really should be no change in Patty's symptoms, because milrinone is quickly eliminated from the body. In other words, if there were going to be problems, they should have made an appearance very shortly after the milrinone was reduced. There's a part of us that still wants to trust our hunches, though.

We confirmed arrangements for the return of Devin and Colin on Christmas Eve. This time, the boys will stay six nights. It never seems like enough.

Tonight, Patty and I plan to watch another of the many Christmas movies I've been recording. Most are really bad, but some are watchable (for example, The Christmas Box last night was rough around the edges, but wasn't painful...most of the time.) The good holiday movies are the ones everyone knows. I have to admit that I've become a total sponge for all things Christmas-related this year.

That's it for now. I'll provide an update on our patient tomorrow.

Love,
Brian

Okay, so we're REALLY proud

Hi everyone:

I mentioned on the earlier blog entry that Patrick had won at his speech meet. I thought some of you who know PJ would like to see his medal. He came home with a second-place prize in the category of Humorous Duet Acting (HDA) at the Morris Invitational, a speech competition. I realize that this probably means far more to us than to most of you, but since I have a forum to brag about my kid, that's exactly what I'm going to do.

Patty and I worry about PJ, just as we do about all of our children. What's more, each of our kids has given us so many reasons to admire them. We're happy to see the focus that an award like this represents, and know that our son has approached all aspects of acting with a real enthusiasm. Perhaps he'll one day bring home an Academy Award to the richly appointed multi-million dollar home he'll have purchased for us.

PJ, this is for you -- YAWWWWWWWWWWWWWPPPPPP!!!

Love,
Dad

Color me skeptical

Hi everyone:

How's that for a sunny, optimistic-sounding subject? Specifically, I'm referring to the decision to cut Patty's milrinone in half (starting this afternoon) and then, if she tolerates its absence well, to remove it from her drug regimen entirely (at least for a while). This would mean that Patty would no longer be lugging around a portable pump 24 hours a day, provided she holds up well without the milrinone.

My skepticism is borne of the experience Patty had in the past when her milrinone was reduced; within 24 hours, she was showing pronounced symptoms of heart failure. Of course, I'm entirely supportive of any move that makes Patty feel more like part of the human race again, and I respect her doctors a great deal, but I just have a nagging hunch that this will be a failed experiment. We shall see...

Patty and I visited Dr. Costanzo this morning to discuss the milrinone plans, to deal with some red tape related to medical insurance, and to chat briefly about future plans. Our understanding is that plasmapheresis will be continued, in combination with the drug rituximab. The doctors feel our worries about this newest medicinal addition are mostly unfounded, so we're going to try to let go of the anxiety and see what happens. We're expecting to hear from the docs at UCH soon with specifics of what, when and where.

PJ and a friend from school won second place in a public speaking competition in Morris this past weekend. We were, and are, pretty proud. His hard work is paying dividends.

Patty's brother Kevin has been selected as a finalist for the position of Superintendent of Oak Park River Forest High School. This Wednesday, December 6, at 8pm, public forums will be held as part of this process. If you live in Oak Park or River Forest, or know of others who do, please encourage them to attend to show their support for Kevin. You may recall from earlier blog entries that Kevin, his wife Sharon and their family all played key roles in the fundraiser for Patty and in providing support to our family many times since. Good luck, Kevin.

More if it happens...

Love,
Brian

P.S. Today's photo reflects the latest craving of Patty's -- large servings of cottage cheese with tomatoes at least once a day. The very thought makes me nauseous.

Un-BEAR-able?

Hi everyone:

In a nod to our masochistic side, Patty and I are sitting through the Bears game. At this point, Rex Grossman has completed as many passes to the Vikings as he has to his own players. Fortunately, the Bears just scored a touchdown on a punt return, so hopefully the rest of the team will be able to compensate for Grossman's absolute and continuous collapse. If the Bears and White Sox ever decide to ask my opinion about how to improve, I'll be sure to share my thoughts, but so far the phone remains silent. C'est la vie.

Patty is feeling pretty miserable today. She is nauseous and is struggling with a stomach ache. I thought that perhaps Rex Grossman was the reason, but she thinks it may be something else. I suspect that some of her ambitions related to holiday decorating may have waned somewhat.

Tomorrow, we have a regular appointment with Dr. Costanzo. We're hoping she's been able to connect with the docs at UCH, so that Patty can have an idea of what to expect in the near future. Of course, we relish the break she's been getting from some of these drugs, and would really like a holiday that isn't fraught with nausea. However, our frustration increases by leaps and bounds whenever we feel that doctors are making decisions without seeking our opinion. When we get answers, we'll be sure to share them with you.

Back to the Bears ...

Love,
Brian

Fun from almost nothing

Hi everyone:

Well, this picture is worth a thousand words, don't you think? I snapped this photo while Patty and I were enjoying lunch at Moe Joe's, a Cajun eatery in Plainfield. I tried turtle soup for the first time--and was pleasantly surprised to find that there is something out there that doesn't taste like chicken. We also ate crawfish, alligator, crab and beef, so we should pretty much be covered off on the protein front.

Patty held up pretty well today, aside from sore joints and muscles. She seemed pretty strong out of the gate this morning, so we decided to do some early holiday browsing, and settled on Plainfield. We've made many such day trips to various little towns, just to see what we might discover.

The days we have alone together seem so infrequent, and yet they mean so much. I actually shared with Patty today how much fun I had walking the aisles of Walgreen's with her! It just seems so amazing and special, at times, to see Patty interacting with the world at large. At points, she was so punchy and energetic that she shoved me, or grabbed my hand and pulled me, running, across the street. At these times, I can almost forget that she's sick.

We poked our head into a handful of antique shops and other boutique stores, and picked up a few moderately tacky Christmas decorations to add to the chaos that is our home. We stopped for a quick visit at Kicker's, and then settled in for an odious made-for-TV Christmas movie on Lifetime. Patty and I are more inclined these days to forgive weaknesses in a feel-good movie than in days past, but some of these flicks are just dismal. When almost everyone in town is conveniently standing in the town square whenever any small announcement is made, and then everyone spontaneously bursts into song with near-perfect voices, you know you've found a winner. It was like A Very Brady Christmas all over again.

The plan for tomorrow is to sleep in, finish our decorating for Christmas, tackle a bit of tedious paperwork and watch the Bears game.

Love,
Brian

Packing up leftovers - how's that for fascinating?

Snow day!!!

Hi everyone:

Our home is a little more densely populated today than is normally the case for a weekday, thanks to the tremendous barrage of snow through the night. Fortunately, the novelty of several inches of snow proved to be a draw for the two youngest, who have spent much of the day outdoors.

Last night, I had helped Kelly bake a cake (one of my first ever) for a school project. Today, the same Bailey's Cake became the family's midday snack. I suspect I'll be helping to make my second-ever Bailey's Cake on Sunday evening.

Patty isn't feeling especially well today. Her stomach is aching, her muscle and joint soreness continues, and she feels somewhat nauseous and quite fatigued.

Love,
Brian

From answers, more questions

Hi everyone:

Well, we predicted no surprises at the hospital today, and there really weren't any...we guess. To be honest, I seem to be wading my way through this sea in a near-constant state of confusion. Almost every day, I pore through online medical reports, in the hope I'll finally have that "aha!" moment in which this whole experience will at last make complete sense. Instead, it seems that each new day brings with it a few seeds of understanding amid crops of confusion.

By all accounts, Patty's right-heart catheterization was a complete success. In fact, the various pressures that are measured as part of this process were normal -- not "heart patient" normal, but normal. Guess where my mind and spirit went with this? I ventured: "I know this is probably a stupid question, but if her heart is behaving so well, why do we need to replace it?"

Dr. Costanzo explained that the main thing these numbers told her was that, aside from the antibodies problem (which continues to be a HUGE problem), Patty continues to be an ideal heart transplant candidate. However, her heart is still, for lack of a better word, dying. Ultimately, it will not continue to have the ability to pump enough blood to meet her body's needs. So, we still need to get our patient to the point where her antibodies will accept a new heart.

A few plans are in the works, and a few are still being discussed. Right now, we know that Dr. Costanzo plans to reduce Patty's continuous milrinone infusion by half, starting early next week. As a test, the doctor discontinued the flow of milrinone briefly during the catheterization, and Patty's pressures remained constant. She explained that since milrinone quickly dissipates when the flow is interrupted, the lack of negative symptoms suggests that perhaps Patty is realizing some longer-term benefits that sometimes occur after patients have been on the drug for some time. Having said this, we observed quite a different effect about 12 hours after her milrinone dose was last reduced, during a stay at University of Chicago Hospital. So, we're curious, but nervous.

The big question both Patty and I shared was, "If milrinone helps, why reduce it?" Dr. Costanzo explained that she wanted to give Patty a bit of a "holiday" from the headaches associated with the drug (it expands blood vessels, which tends to make one more prone to headache.) As well, milrinone, for all its many selling points, isn't always entirely benign in its effects on the heart.

We have speculated that the subtext here is that the doctors want to shift some of the focus toward decreasing discomfort as much as possible, because the wait for a heart may be a lengthy one. We also speculated that doctors may be wanting to give Patty a short break from the nastier aspects of her therapy, so that she's better equipped both physically and mentally for the next series of options. Patty offered that perhaps this is about doctors conceding, at least to a degree, that quality of life may now be a more realistic goal than quantity; I'm not sure I agree. To be honest, I'm just more confused tonight than I was this morning, and I don't feel any closer to becoming a knight in shining armor for Patty.

Love,
Brian

More sad news

Hi everyone:

Ellen Joyce, a high school friend of Patty's and a blog regular, let us know on Monday that her father had died after an illness of several months. Patty had fond memories of Mr. Joyce, and our thoughts are with her and her family.

Love,
Brian

So sore, eh

Hi everyone:

Although Patty feels much better in many ways than she has through much of this year, she still doesn't feel great most of the time. In particular, she has been struggling with moderate arthritis-like symptoms in nearly all of her joints and muscles--everything from her fingers and elbows to the bottoms of her feet. As you can see, though, it doesn't impede her ability to eat a bowl of soup...and it clearly doesn't discourage me from photographic her in the act.

Patty also battles fatigue much of the time. For example, she awakened late yesterday morning, had a two-hour nap in the afternoon, and had to pull the plug on the evening before 11pm because she just couldn't keep her eyes open. This may not be atypical for some people, but Patty has historically kept much shorter sleeping hours than this. We suspect this may be a rebound of her lupus symptoms, which might be expected with the discontinuation of Cytoxan. Lupus could also explain the bone and muscle soreness.

Our patient will undergo a right-heart catheterization tomorrow afternoon; she already has two under her belt. The purpose, as we understand it, is to measure the various pressures in her heart, which in turn can be translated into an assessment of cardiac output. Doctors then have some form of benchmark against which to evaluate future options, some of which I discussed earlier this week. For the most part, Patty's pressures have been pretty good for a person with a damaged heart. In particular, she has little of the edema (swelling due to water retention) often experienced by those with heart failure. In other words, Patty and I aren't expecting any real surprises; of course, there's no guarantee against one, especially within this somewhat crazy existence.

That's all I have for now...I'll get back to you later if anything else happens.

Love,
Brian

Oh Christmas tree

Hi everyone:

The tree is up, and several other delightfully tacky items are distributed throughout the house. Next up -- outside lights. Christmas is seeming especially important to me this year; hell, we may not even make it into December before we watch "It's a Wonderful Life."

Love,
Brian

Another uneventful day

Hi everyone:

As you can see, Patty is snoozing next to the fire this afternoon. In the hours prior, she took care of some work-related issues and a few light domestic matters while I worked on Visual Congruence business. Tonight, we have no special plans.

All in all, Patty felt pretty well today, after a bit of nausea in the morning and an overall sense of being chilly throughout the day. I've been enjoying these days without Cytoxan; while it lasts, it is seeming like the old Patty is back.

Devin and Colin made it home safely last night. Now I'm working on plans for their December visit. I can't wait.

That's it for now. We'll try to spice things up in the future, okay?

Love,
Brian

More doc talk

Hi everyone:

Devin and Colin returned to Canada this afternoon, after a short but active visit; we were sad to see them leave, but grateful for their presence even for these few days.

Just before we left to take the boys to the airport, we received a call from Dr. Costanzo at Edward Hospital. She was calling in part to respond to an email Patty and I sent to her last week, and in part to update us on what doctors think may be the next best steps for Patty's care.

Dr. Costanzo explained that as she considers Patty's care, she thinks about what she would opt to do if she were in Patty's place. She again stated that, given Patty's age, it's too early to stop trying new things, even if it seems at times like we're fighting a losing battle and that Patty's quality of life may not currently be so wonderful.

The next proposed course of action is a round or so of rituximab (the drug that worries me so much), along with total lymphoid irradiation and possibly cytoxan administered intravenously. We don't know if plasmapheresis and IVIG are still to be part of the mix, or if they've been relegated to the scrap heap of ineffective treatments. For the first time in some time, we are again hearing murmurs that some form of external assist device might become necessary at some point. Sorry for all the "medical-speak" -- it's virtually impossible to explain these things any more easily. Suffice it to say that Patty has worked her way, without real success, through most of the traditional solutions to the antibodies issue, and is now trying lesser-tested approaches in the hope something tips the scales in her favor.

I asked Dr. Costanzo if it would be "stupidly optimistic" (a term we've shared with the doctor in a different context before) to think Patty could perhaps maintain for a significant time with her current heart and the milrinone transfusion. Dr. Costanzo said that she wouldn't call it "stupid" but certainly very optimistic, and assured us that she was still aware of Patty's desire to preserve a reasonable quality of life. This Thursday, Dr. Costanzo will perform a right-heart catheterization on Patty to check her heart pressures and cardiac output. The results from this test will help doctors plan for next steps.

Before signing off, Dr. Costanzo said something I've never heard from a doctor before -- she said, "I love you both." The comment was greatly appreciated, as the feeling is mutual.

Love,
Brian

Some chaos, some fun

Hi everyone:

I seem to be doing this a lot lately, but I must apologize again for falling behind on my updates to this blog. Whenever there are seven of us in the house, things tend toward the chaotic, so I find it a bit harder to carve out the time to write much of substance.

Last night, I took all five kids into the city for the Wolfmother concert at the Riviera Theatre. After the long train ride (almost all the possible stops) and a not-insignificant cab trip, we arrived at the venue only to find our names had been left off the guest list for this sold-out show. I think my facial expression must have spoken volumes, because the kids were remarkably quiet for a good long time while we awaited some resolution. I just could not comprehend how I would be able to make this up to the kids -- especially for Devin and Colin in this instance, because this was to be their first-ever concert.

Fortunately, I was able to provide enough background information about the arrangements for things to be resolved in our favor. I am grateful that the staff of the Riviera, the tour staff of the band and whomever they reached at the band's management company all worked toward getting things ironed out. To be honest, I had low expectations for what I would take from the evening; going into things, I was convinced I would only enjoy one song. I ended up being pleasantly surprised, because this band was so energetic in concert. What's more, all of the children had a great time, and that was the goal, so...mission accomplished. I was feeling happy enough about their experience that I didn't even mind too much that with the return cab ride and train journey, we didn't get home until almost 2:15 a.m.

Today, we didn't do much. We watched the Bears game (sigh), ran a couple of errands, and watched the film Shadowlands, which is a film both Patty and I love. Given Patty's situation, this movie is a bit rough for us to get through, but it's still a beautiful story. Patty felt well enough to cook a fairly elaborate Italian dinner for the whole family -- linguini with clam sauce and both chicken and veal parmigiana. Lest anyone think I'm being a slave-driver, Patty insisted on being in charge. The meal was delicious.

On the subject of Patty, since she is the intended subject of this blog, she has been faring pretty well of late. She still falls short of the average person on energy levels, and from time to time is teased by weaker headaches and nausea, but all in all is feeling much better than when she was taking Cytoxan. She also seems to be experiencing arthritis-like symptoms; we'll see if this evolves into anything more. This week, we will press a little harder for some answers about what to expect in the weeks and months to come. Right now, it's nice to see Patty feeling better, even if to a degree it may be just a mirage.

Devin and Colin will be leaving for Canada tomorrow. Whether their visit is for three days or for six weeks, the time always seems to pass too quickly. The only thing that eases the sting of their departure this time is our plan to bring them back for part of the Christmas holidays.

Love,
Brian

A normal Friday

Hi everyone:

After a pretty exciting Thanksgiving, we've settled into a more relaxed pattern yet again. Yesterday, we took the kids to see Stranger than Fiction, the new Will Ferrell film. We think the kids enjoyed it, although Patty and I were disappointed. Last night, we spent a few hours next door with our friend Trish. Tonight, I'm taking all the kids into the city for a Wolfmother concert. The prospect seems pretty daunting at this point--especially the late milk-run train--although I'm sure I'll ultimately enjoy myself. More later...

Love,
Brian

Added thoughts from the lesser half

Hi everyone:

I wanted to echo some of the sentiments Patty shared in her message tonight. Today really was, all in all, a spectacular day.

Devin and Colin are here, and I have missed them every day they've been away. My parents drove the boys to the airport so that we could have them here for Thanksgiving; this involves some city driving, of which my parents are not fond, particularly at those times of year when weather can be a gamble -- so we're thankful they would do this for us.

I was touched when Devin remembered to bring me Cherry Blossoms, a chocolate cordial treat I really enjoy and that I had mentioned to the boys in passing. I was again moved when all my children posed (without rabbit ears or crossed eyes) for a family photograph; to the best of my knowledge, we have had pictures taken as a group only three times in the whole time we've known each other. I know I'm biased, but they all look so remarkable to me. I felt flattered and a little surprised when our adult nephew Luke thanked me for writing this blog; I've always felt thankful that people are interested enough to be regular visitors. I was pleased to see Patty so happy to be surrounded by loved ones, and to see her smiling and healthy-looking.

After all of this, and once much of the day's excitement had died down, I took a telephone call from my friend Chris in Toronto. I have known Chris since we were too young to know we even knew one another...if that makes any sense. We have had periods where we lost touch, but always found ourselves re-establishing contact.

For the most part, my telephone conversations with Chris involve a significant amount of yelling, a liberal smattering of profanity, and a lot of critical assessment of our favorite teams. Tonight, we ranted about football, hockey, music, children, disease, Patty, politics and a few other bridging topics. Sometimes we talk about personal issues, but we try to keep it at a "guy" level, which means we strive for a degree of cool detachment (usually with only limited success.)

Before we signed off tonight, though, Chris caught me off guard. Where we would normally exchange some form of friendly insult, Chris instead asked me to listen for a moment. He then said something very complimentary and supportive about Patty, about me, and about my relationship with Patty. I won't share the specifics, but it turns out to be one of the things that both Patty and I are most thankful for today. Thanks, Chris.

Love,
Brian

Thanksgiving pics

The family -- all seven of us
(I've been waiting for this pic for a long time)



Neil (with plates)



Patty (if you didn't know that, you haven't been paying attention)

The patient speaks

Hi -- it's Patty. I wanted to pop in and tell you about our day -- this is non-fiction -- really:

We woke up this morning at our own pace, with no alarms. Without any real stress, we prepared for our day, including pulling together salads for Thanksgiving and getting a family ready for an outing. When we left for the airport to pick up Devin and Colin, amid perfect weather, we didn't forget anything and we got away on time. There was no traffic on the way to the airport, and we found a parking space at the front of the lot. When we entered the airport, we discovered that the boys' flight was early. Their baggage was waiting when we got downstairs to claim it. We left the airport property to a more-or-less clear freeway. At one point, we needed to choose one of two options on 290; I chose the one I never choose, and it was totally clear, while our typical route was clogged with an accident. We arrived at Mike's house and were able to park right in front of his house. Dinner was delicious, our companions were warm and welcoming, and the conversation was at times hilarious. We saw some of the family members we've missed alot, like Luke, and could not stop feeling great that Devin and Colin were with us. We left at a reasonable time for my energy levels, and enjoyed traffic-free routes all the way home. We had a nice couple of hours watching a documentary with the children, who then quietly proceeded upstairs for the evening, allowing us the peace and quiet necessary to write a blog entry such as this.

With all of the huge things we have to be grateful for -- and, believe us, we are -- it's a day like today, where everything just seems to click and go right, that I find the day itself, and the events of such a day, something to be truly thankful for.

Thank you all for everything.

Love,
Patty

Wow, what a streak of boring entries

Hi everyone:

I realize this is a ridiculous measure for us to include among feathers in our cap, but both Patty and I have enjoyed seeing the daily readership of the blog increase over time -- on average, just under 60 people stop by each day. There truly is a comfort in knowing that people are pulling for you, and a greater comfort in knowing they are sticking with the play-by-play.

I guess this is why I'm feeling guilty about the blog contributions I've offered over the past three days. To be honest, there really hasn't been much to report. We haven't done much of consequence, and there haven't been any real new medical developments. We have a few questions for Patty's doctors about her future care, but we'd rather share these when we've given these thoughts more substance.

Perhaps the most noteworthy thing from these past few days, and today in particular, is that Patty is feeling much, much better. Today, I asked her, "How are you doing?" Her reply gave me a double-take. She said, "Brian, I feel wonderful." I think that is one of the nicest things I've heard in months. Of course, we know that there are many hurdles ahead, and also know that the absence of Cytoxan may be a wolf in sheep's clothing, but I truly believe there was no better medicine for Patty at this point in time than a day through which she just felt well. I wish you could see my smile as I write this.

If I don't write again before then, I hope you all have a wonderful Thanksgiving. Please know that you are part of what we are thankful for.

Love,
Brian

...and a pretty low-key Tuesday

Hi everyone:

Well, I don't have any edge-of-your-seat excitement to offer today, either. Patty seemed unusually tired until mid-afternoon, but has seemed pretty energetic since then. The two of us visited a therapist early this evening--our first such session without the kids since the heart attack. For the most part, Patty is feeling less nauseous than she did on Cytoxan, although the symptoms are not entirely gone. Beyond that, we've been having a lot of heart-to-heart discussions about what the future may hold, and looking forward to the festivities later this week. If anything else happens, I'll be back in touch.

Love,
Brian

A low-key Monday

Hi everyone:

Today has been a mostly uneventful day. Both Patty and I focused on getting things done. I concentrated on client work, while Patty did some light work around the house. The kids had an abbreviated school day, as will be the case tomorrow. Patty and I went for a short walk later this afternoon, and have no real plans for the evening. How's that for a thrill-a-minute existence?

Love,
Brian

There's no place like home...

Hi everyone:

My apologies for failing to provide an update yesterday. A few factors conspired to keep me from writing. First, I was enjoying Patty's first full day home after five nights in the hospital. You have no idea how nice it is to have her home. Second, I needed to run Neil to the Metra station, which brought to an end another enjoyable visit. Whenever Neil visits, we laugh at least 80% of the time--and that, as they say, is the best medicine. Third, I had to tackle a few errands, so I was out for much of the afternoon and early evening. Finally, we had an evening with Kathleen and Don, so that pretty much filled the balance of my day.

Although Patty is still weak and is experiencing a few nuisance side effects from her antibiotics, she is feeling much better than she did last week. In particular, her spirits seem to have been boosted greatly as a result of her escape from captivity. Certainly, we have had some sad and exasperated moments as well, but anything beats being stuck in the hospital.

Both Patty and Don ran out of steam at around 10:30 last night, so Kathleen and I wandered over to Kicker's for a drink. For some reason, I seem to be losing much of my comfort level in social situations, and also seem prone to causing misunderstandings. I think I'm sometimes distracted by one thought or another, and as a result forget to be sufficiently aware of the comfort of those around me. Or, perhaps, I've just become too sensitive, so that I'm more likely to perceive nothing at all as a slight. I yearn for a day when Patty is well enough again that we can socialize as a couple, because I feel so much more at ease when I can follow her lead in a conversation.

Yesterday, we started to load albums with photographs we had taken over the course of our relationship. We quickly discovered that we had enough pictures to fill several albums...and this is just from the period before we owned a digital camera. It's amazing how poignant such a process can be.

I'm really looking forward to the Thanksgiving weekend. Devin and Colin will visit, so our entire family will be together, an event that happens far too seldom for my liking. What's more, we're hoping to have the boys down for the Christmas holiday as well, so we'll go from famine to feast in a sense. Let's hope the holiday season brings a little magic to Patty; she deserves it.

Love,
Brian

Naked fun

Hi everyone:

Last night, I took PJ, Kelly and Connor to the Barenaked Ladies concert at the Allstate Arena. As you can see, the band was gracious enough not only to meet with the kids, but also to pose for a group photograph (and several individual snaps.) The band demonstrates an incredible stage presence, and each member seems unbelievably genuine and down-to-earth.

We're also grateful to BNL's management company, Nettwerk, for making all of this possible. When Patty was unable to make the show, they did not hesitate to agree to allow the three kids to attend in her stead. We had great seats for a great show. I'm pretty sure this was one of the best days in a largely unpleasant year for the kids. The only thing that might have made it better was if Devin and Colin could have joined us; perhaps there will be another opportunity some time in the future.

Here's even better news: Patty is home from the hospital. She has been taken off Cytoxan, the drug that makes her so nauseous. This will likely also mean we're taking a bit of a break in trying to lower the PRA, but it will be worth the wait if Patty can catch a bit of a break from feeling ill all the time. We arrived home at around 2pm today; since then, Patty has been relaxing on the sofa.

It's nice to have our patient home.

Love,
Brian

The band in action

Better news for a change

Hi everyone:

Since it always seems we're sharing news that's either bad, terrible or even worse, let's depart from the norm for once and offer some good news. It appears that Patty has conquered the infection that brought her to the hospital on Sunday. Her last couple of rounds of cultures have been entirely clean of the bacteria klebsiella pneumoniae; the speed of her response to antibiotics has surprised even her doctors. Barring any major setbacks, Patty should have her PICC line re-implanted tomorrow, and could be released before the weekend.

In hindsight, we are so glad that the decision was made to admit Patty on Sunday evening; had she gone home to tough things out, we might be facing a much different situation right now. From what I have been able to research about this particular bacteria, its impact on the body is not a pleasant one, and its presence can quickly make a person suffer greatly. I'll spare you the gory details, since they no longer seem relevant. Thankfully, Patty was able to mostly dodge that bullet -- although I will be happy never to again witness what I saw Sunday evening.

Of course, all silver linings for Patty these days are a bit frayed and in danger of tearing, so here are a few of the not-so-joyous aspects of her current state. She has been battling crushing headaches, which doctors believe are the result of her body thinking it still needs to combat an illness that is no longer there. They will be increasing her pain medication for the shorter term to give her some relief; this will include an IV medication that Patty can control the amount of, to a certain extent. As a precaution, doctors plan to do another CT scan of her brain and neck to rule out any other problems.

She has been taken off Cytoxan, which her transplant team believes suppressed her immune system enough to leave her vulnerable to infection. This choice likely will have some implications in terms of reducing her antibodies, but that's an issue best left for another day.

Our neighbor Trish graciously brought the kids to the hospital for a visit last night, and sat with Patty for a visit (even though Patty dozed through much of it, as is her wont.) Kathleen continues to be on hand to help in every way possible, both at the hospital and in our home. Neil has been visiting for yesterday and today, and has proven once again to be a confidante when I need to be a bit weaker in my perspective on the world. Patty has also been visited by five of her students, which I think has helped her feel connected to her life before talk of transplants and such.

Tomorrow, I'm taking the kids to the Barenaked Ladies concert. Originally, Patty had planned to attend the show, but clearly now will not be able to go, under the circumstances. Management for the band very generously agreed not only to allow the kids to attend the show, but also agreed to a meet-and-greet before the band takes the stage. I hope this will be a pleasant distraction for the kids, because the past few days have been hard on them. I'm really wishing the show was happening while Devin and Colin were in town, but I've learned that you can't control everything in life, in spite of your wishes.

That's all I have to report for now. Thanks again to all for your kind thoughts and gestures.

Love,
Brian

On my way back to the hospital

Hi everyone:

I'm heading out the door to the hospital. I spoke briefly with Patty this morning. She continues to have headaches, and still has a low-grade (99+) fever, but sounds a bit more energetic this morning than yesterday. MaryBeth visited yesterday, and Neil is planning to come in today. Kathleen has helped us a great deal with kid coverage, as always.

Last night at home, I sat in the family room with Kathleen and researched gram-negative bacteria. After many online links took me nowhere, I finally found one that seemed to explain things clearly...at least until the third paragraph, when I encountered the word "goat." Kathleen almost burst blood vessels she was laughing so hard.

Gotta run...have a good day. We'll hope for the same for Patty.

Love,
Brian

More setbacks

Hi everyone:

I'm sorry I haven't written again before now, except to those who happened to be on my rather dated e-mail list. Until now, I had not left the hospital except to drop the kids at home last night. Here's what has happened since my last posting.

As mentioned, we came to Edward Hospital because Patty had been running fevers for four consecutive days. Her doctors at UCH asked that Patty come in for bloodwork and cultures to see why she might be ailing. While Patty was in the E.R. having blood drawn and evaluated, she vomited several times and experienced some unsettlingly high temperature numbers -- the highest was 103.0.

Most unsettling was the 30-minute episode of shivering that bordered on thrashing at one point, while Patty was in the E.R. Kelly and Connor were with us at the time, and I could see that they were truly rattled. To be honest, I too was scared. Patty's lips turned a deep blue, her eyes were bloodshot and she was sore from all the shaking. Compounding the problem was the fact almost all of the medical staff were tied up in the next room dealing with a patient in critical condition. By the time a doctor finally came back to Patty, she wasn't feeling nearly as desperate. She did, however, save one round of vomiting for the doctor to see, which was enough to tip the scales in favor of an admission.

Patty had a rough night, and went to bed with few answers, other than finding out that her white blood cell count was low, at 2.4. This morning, though, we found out that her cultures came back positive for gram-negative rod bacteria. The doctors said that this is one of the most severe infections of the blood, and quite dangerous--particularly given her cardiac situation. I spoke with Rachel (one of our family medical experts), who assured me that this is a treatable condition and not as uncommon as I might think in an immunosuppressed patient. Doctors have told us that Patty should anticipate a hospitalization of no less than a week, and quite possibly longer. They plan to give her Neupogen to help bolster her white blood cell counts (this drug is similar to Neulasta, the much-advertised drug that serves a similar purpose.)

Patty has been suffering from headaches today, although her fever has been of a much lower grade when it has been there at all. Today, Patty's PICC line and Quinton catheter were removed, because it is believed that one or both are the likely source of the infection. Patty is being hit with round after round of intravenous antibiotics in the hope her infection can be brought under control. The night tends to be Patty's worst time with the fever, so we'll just have to wait and see how she fares tonight.

I'm sure there are things I've forgotten...if I remember, I'll be sure to keep some notes. I may not be able to write again until tomorrow night or even Wednesday morning, but I'll do my best. Of course, we're unsettled by this latest development, because it just seems like Patty never catches much of a break. Please keep hoping and wishing for the best. Thanks, all.

Love,
Brian

The struggle continues

Hi everyone:

Patty continues to have fevers ranging from 99-101.2. Patty believes it is a virus, and thus something that can't really be treated, but we called her doctors as a precaution. They have asked Patty to get labs done later this afternoon, so we'll head over to Edward Hospital in just a while. Should we get any answers today, I'll write again tonight. Please keep your fingers crossed that all of this does not lead to a hospitalization; Patty is pretty anxious and sad about this prospect.

Love,
Brian

P.S. As long as your fingers are crossed, could you also wish that the Bears will play better tonight than they did last week?

Somewhat better but still ailing

Hi everyone:

Please don't be alarmed. Patty isn't having a "Touched by An Angel" experience in the photo to the right. Every once in a while, I snap a number of photos and none of them look particularly flattering, so I play with them in Photoshop to achieve a more desirable effect.

Patty's malaise has continued into today. She has had a steady headache since she awakened this morning, and has experienced low-grade fevers and nausea throughout the day. Early this morning, she measured her temp at 100.8, but for most of the day has been able to stay below the three-digit measures. Having said all this, Patty is still feeling quite a bit better than yesterday.

PJ slept over at a friend's house last night and is at a school speech meet today. Kelly is visiting her cousin Amanda for the night, and Connor has his cousin Jake staying in our home. I took the boys out for lunch, shuffleboard and errands while Patty rested this afternoon. So far, we have no major plans for the evening. I'll write again if there's anything new to report.

Love,
Brian

A horrible night, a horrible day

Hi everyone:

Last night was a horrible night for Patty, and one not much better for me. Patty seems to have picked up some form of bug, and it is hitting her pretty hard. Even with her pain relievers, she is maintaining a low-grade fever--mostly in the 100 range, although it climbed as high as 101.2.

Yesterday evening, Patty had a pretty powerful headache that has carried on through the night and into today. She threw up this morning, and is feeling pretty weak and tired. Her heart rate also seems to be a bit higher than normal, although I would imagine her fever could be causing her heart to work a bit harder.

We'll watch her condition as the day progresses; if she gets any worse, we'll call her doctors. Of course, Patty's fear is that she'll end up in the hospital again. I won't give her a choice if things deteriorate further.

I don't really count, but I also had a terrible night. I couldn't sleep because I kept convincing myself that Patty needed to be monitored. I finally dozed off at around 4:45 am, and promptly had a nightmare. I drifted off again about 30 minutes later, and then had three more mini-nightmares in rapid succession. After that, I pretty much gave up. So, my plan for today is to do some client work, help Patty when I can, and then shoot for a nap sometime later in the day. I'm pretty sure I checked Patty's pulse more than 100 times last night.

I really am worried about Patty. There just seem to be too many things happening that can't easily be explained away as typical side effects of her drugs. I hope I'm worrying without a real basis in fact. We shall see...

Love,
Brian

P.S. On the positive side, Patty got a haircut yesterday that she's pretty pleased with. Her chemo drugs had thinned her hair; this new "do" makes it less apparent.

Family times

Hi everyone:

I am very late in posting today, because I've been pretty busy with work and family commitments. Last night, I took Kelly and Connor to a Rain Forest presentation at Connor's school; I had a surprisingly good time and laughed much more than I anticipated. After the show, I stopped into Kickers for a cocktail. This is going to sound nauseatingly saccharin, but I feel like less than half of myself when I socialize without Patty. I can still have interesting conversations, as I did last night, but I miss Patty's perspective and her energy.

Tonight, we attended Kelly's choir concert at the high school. Again, we enjoyed ourselves, and our daughter did us proud.

Devin and Colin will be visiting for Thanksgiving. They will fly in on the 23rd and fly back out on the 27th. This is a short visit, but it's better than nothing and long overdue. I haven't seen Devin since March. While they're here, we'll be attending a concert by the band Wolfmother, which should be fun. To the best of my knowledge, this will be Devin and Colin's first big concert experience.

Patty and I went for a walk this morning. Patty's legs grew tired quickly, which could just be a consequence of deconditioning, but her heavy breathing was disconcerting to me. Tonight, she is suffering from a pretty intense headache. She's tough--really tough--but it all seems a bit unfair to me. More tomorrow...

Love,
Brian

Connor pets an alligator



An out-of-focus pic (sorry) of Kelly performing



The walk

Pop quiz

Hi everyone:

Please look at this afternoon's photo, and try your luck at today's quiz. In the photo, is Patty:

(a) Preparing herself for a kiss
(b) Deep in thought
(c) Out like a light

If you answered (c), you're correct. Patty is having a pretty solid afternoon nap. Yesterday was an ambitious day, and the deficit is being repaid today. With what I perceive to be increasing frequency, Patty is experiencing pronounced fatigue and irregular heartbeats (although these seem to be brief in most cases.) In addition, Patty has often been saying, "I don't know how to explain it, but I just don't feel right." For some reason, these general feelings of poor health are profoundly unsettling to me.

We received a call today from Bednarcik Junior High, a school that both Kelly and PJ attended. The staff and faculty had organized a donation effort, and invited us to pick up a check. We continue to be touched by these amazing displays of kindness. As we've mentioned previously, Patty's colleagues at OEHS, and some former colleagues at OHS, continue to provide support with meals and groceries. Thank you all.

From time to time, when I really think about the fact that Patty has been in the newspaper, met famous musicians and attracted the attention and received the generosity of so much of our community, I feel some of my deepest waves of sadness. While I greatly appreciate what people have done and continue to do, I also realize that there's a reason for this outpouring, and that reason is heartbreaking to me. If I include the kids in my thoughts, this sadness is compounded. I don't indulge these thoughts often, because I don't think they do Patty much good, but sometimes they get through the filter.

As of this morning, Patty has survived two full years since her heart attack. My hope is that we'll be able to report such anniversaries for so long that it will seem ridiculous (and a little morbid) to keep count.

Love,
Brian

Gorgeous, absolutely gorgeous

Nothing much of note today

Hi everyone:

Our busy schedule today afforded us some distraction from yesterday's news, although we've certainly had our down moments. To be honest, I seem to be more distressed than is Patty this time around. This morning, we did two presentations to health classes at the high school and Patty voted before we settled in at home for much of the afternoon. I then plugged away at some work while Patty caught a brief nap.

Tomorrow is the two-year anniversary of Patty's heart attack. I think we had both hoped for much better outcomes at this point, but we can also be grateful for what we still have.

Love,
Brian

The results are in...

Well, we received a call around dinnertime this evening from one of Patty's cardiologists. Her PRA numbers were relatively unchanged, although the doctor claimed that these numbers show "some improvement" over the numbers from last month. Wow. In addition, he said that some of the specific antigens that were new to the last reading did not appear this time around, which would suggest that the drug regimen may be having some minor positive effect. Overall, though, the numbers speak volumes about just how resilient Patty's antibodies truly are.

We did get a sense this time that doctors are recognizing that Patty's problems are unlikely to have a simple resolution, and that the steps taken thus far aren't yielding hopeful outcomes. Also, this doctor said they are now wanting to weigh quality of life more heavily in options being considered. We are a bit worried that doctors are feeling we are resistant to new options; this isn't the case. We just want to make sure that Patty doesn't try one illness-inducing treatment after another without ever having a chance to enjoy a few weeks or months of nausea-free living. I want my wife to be able to wake up in the morning and immediately do whatever she wants with her day, without having one malady or another keep her down.

Sometime in the near future, doctors are supposed to get back to us with some additional thoughts about next steps. Here's what we either think or know:

• We know that one option being considered is to hit Patty with huge doses of Cytoxan intravenously once a month, rather than have her take pills daily that make her sick. The idea here would be to keep Patty premedicated (or, as I would call it, "doped up") for the time her body would normally be suffering side effects.
  
  
• We do know that an appointment is being scheduled with a lupus/immunology expert. Of course, it will be hard to truly understand the lupus influence since Patty is on cytoxan, and our understanding is that Patty will always be on cytoxan or similar drugs. This issue is at the root of our challenge to doctors -- if Patty is always on a drug that makes her perpetually sick, how can she ever enjoy any real quality of life?
  
  
• We know that total lymphoid irradiation (TLI) is being considered as an option. This is a treatment usually reserved for post-transplant rejection issues, but it has been successful in certain instances to reduce antibodies before transplant. We're wondering how likely it will be that the insurance company will agree to pay for these "hail mary" types of interventions.
  
  
• The other option on the table is administration of the drug rituximab. This drug is usually used to treat non-Hodgkin's lymphoma, but has been used in recent years to help reduce antibodies before renal transplantation. If I understand correctly, doctors hope that a side effect of the drug -- depletion of antibodies -- will work in Patty's favor. Although two doctors suggested this drug is "well tolerated by most," online stats suggest that 99% of people experience adverse effects, several of which sound pretty frightening. If I understand the literature, three of the 769 study subjects died of cardiac events shortly after receiving their first dose, and others contracted other serious conditions, such as meningitis. As always, these are the types of drugs that can work near-miracles, but there always seems to be an accompanying gamble.
  
  

Well, that's enough for now. Our emotions are fluctuating tonight. We've had a few glimmers of non-denial, which we don't seem prepared to face right now. For the most part, Patty has been giggling about how doctors are once again saying they will "put their heads together;" our presumption then, and now, has been that they are thinking and talking about Patty's case, so this struck Patty as a bit humorous. Perhaps the next time we write we'll have let this sink in a little more. I hope not.

Love,
Brian

Impatience aplenty

Hi everyone:

Well, it's late in the afternoon and we've heard nothing from doctors about the latest PRA results. We left a message for the transplant coordinator much earlier today, but so far have received no response. For some reason, these delays in getting answers are among the most frustrating aspects of Patty's struggle. Of course, unless the numbers are dramatically reduced, we're making little progress, but it still seems important to know where things stand so that we can make informed decisions for the future.

Patty has felt poorly for most of the day. Could it be because the Bears disappointed us so greatly yesterday? Or could it be her health? As I write this, she is sound asleep on the sofa. If we get any answers, I'll post again. Otherwise, I'll be back with you tomorrow.

Love,
Brian

Sunday stuff

Hi everyone:

First, I apologize for not writing yesterday. We've had house guests for the entire weekend, so I haven't had the chance before now to put together an entry. I'm squeezing this one in before (a) the Bears dismantle the Dolphins, (b) I make my first ever beer-can chicken, and (c) the Toronto Argonauts start their drive toward the Grey Cup. My beloved Maple Leafs won big last night as well, so (almost) all is well in the world. Of course, there's still the small matter of the needed heart, but you can't have everything at the moment you want it, right?

A second apology -- I'm sorry I haven't been sharing as many photos. As I've mentioned previously, the posting of pictures is the biggest albatross in the Blogger world, enough so that sometimes it just isn't worth the bother. Today, things seem to be working okay, so I'll catch things up a bit.

Yesterday, Patty finished her second round of IVIG while Cindy watched movies and Kathleen and I checked out the huge Woodman's grocery store in North Aurora. In the evening, the four of us saw Borat, the new mockumentary with Sasha Cohen of Da Ali G Show. The film crossed pretty nearly every line of good taste, and was about as un-PC as you can imagine. Having said this, the movie provided us with some much-needed roaring laughs. We then went out for dinner, which was also fun. When we returned home, I fell asleep on the sofa while the ladies stayed up and talked about whatever women talk about -- knitting and housecleaning, perhaps? Oh, come ON...I was KIDDING!

Today, Patty has been feeling pretty rough, although she has managed to keep her stomach down so far. As you can see from the photo, I convinced her to wear my new Bears jersey, which actually falls to about her knees. She thinks it looks a bit silly. Of course, I think it looks great; Urlacher doesn't hold a candle to her. More soon...

Love,
Brian

Patty, Cindy, and Kathleen



Plasmapheresis (again)

Apheresis done, on to IVIG

Hi everyone:

We just got home from University of Chicago Hospital, where Patty underwent the second plasmapheresis treatment (you'll recall they do these in sets of two, with a day off between.) Everything went just fine; hopefully, behind the scenes, we'll be realizing the desired effect in terms of antibody reduction. Time will tell...

I was able to donate blood today, which occupied no more than 20 minutes of the time we spent waiting for Patty's treatment to finish. I'm a bit embarrassed and even more ashamed that I've never donated blood before. On two other occasions, years ago, I offered to donate, and was declined because of allergies or a cold. If Patty is scheduled for plasmapheresis again in a month, my plan is to donate platelets at that time. I figure that if I try to make a donation each time Patty needs to spend a day in the hospital, I can make up for my earlier failings.

After plasmapheresis, we met with one of the cardiologists, who said that she thinks the various doctors involved in Patty's care need to put their heads together and propose what other options may be available. She acknowledged that at some point quality of life might become a better focus than quantity, and that she would support whatever decisions we might ultimately make, unless she thought we were being foolish. Based on Patty's current circumstances, she did not feel we were in any way being foolish in asking these questions.

We do not have the PRA results yet; these will likely be available on Monday. These will reflect the previous round of IVIG and plasmapheresis, rather than today's. Of course, we are really hoping these numbers will have dropped greatly, because that will give us more reason for optimism. Patty thinks there will be an improvement; I'm hopeful, but skeptical (and worried.)

Soon, Patty's home health nurse will arrive to get the IVIG infusion started. Cindy and Kathleen are planning to visit this evening. And that's about all I have to report for now. More later...

Love,
Brian

Blown away

Hi everyone:

A couple of weeks ago, while visiting for an evening, Don and Kathleen loaned us their copy of a CD by their niece, Jessica Callahan. Several times, we had planned to listen to it but, until tonight, hadn't found the right moment.

From the first song to the last, we were quite literally blown away -- she is truly phenomenal. Why aren't we all aware of this woman, her beautiful music and her oh-so-obvious talent? Her thoughtful, very visual lyrics and perfect command of her voice exhibit an amazing maturity. Wow. I am in awe. You can hear her at her MySpace page, at http://www.myspace.com/jessicacallahanmusic.

I'm not sure how you can get a copy of the CD we listened to, titled Standing--her label for this release, Blindstick Records, is not online--but you should find a way. I would be very surprised if you have a reaction any less enthusiastic than my own.

Love,
Brian

Low-key Thursday

Hi everyone:

Not much to report today. Patty has felt weak for much of the day, but her nausea seemed mostly manageable. I am starting to worry about what seems to be an increasing intensity of fatigue for Patty; having said this, she outlasted me last night, and watched a movie with Kathleen while I snored on the sofa.

In addition, Patty has had some episodes over the past few days in which her heart feels like it is beating erratically. Of course, we'll keep an eye on these things and discuss them with her doctors. Tomorrow, Patty will undergo a second round of plasmapheresis, and will start an infusion of IVIG later in the day. She also has a 1pm appointment with her cardiologist. I'll write again if and when there's anything to report.

Love,
Brian

A crazy Wednesday

Hi everyone:

Today was a rollercoaster of a day for our patient. First, we started the day with a trek down to University of Chicago Hospital for another round of plasmapheresis, and to hand in some vials of blood to test Patty's PRA once again. We should have results by Monday; I hope so much the results are better than last time around, although we're a bit pessimistic. I offered to donate blood while I was there, since the donation area is in the same place as where Patty was undergoing treatment; I thought it would help fill the time. Unfortunately, my allergies were acting up this morning, so I was given the thumbs down.

Patty had a bit of a hard time with plasmapheresis today; for some reason, it gave her abdominal cramps, chills, a reddish hue to her face, a pounding headache, nausea...and a par-tr-idge in a pear tree. Okay, maybe not the last part. That really was a bad joke, although the symptoms I describe are accurate. I hope there's no meaning in this, but of course anything new now seems like a threat.

Kelly and Connor braved the cold last night for a long round of trick-or-treating. Unfortunately, their "take" for the night did not include a lot of my favorites, so the overall experience was a bit disappointing. They had a great time, though, so I guess there's something in that. Okay, that may have been an even worse joke...guess my sense of humor is a bit awry today. Patty and I are actually feeling a bit guilty about Halloween this year, because so much of it seems to have been an afterthought. I think it's important to try to pluck some semblance of normalcy out of the general hustle and bustle; sometimes, though, stuff falls through the cracks.

MaryKate brought Emma (a.k.a. the cutest baby in the history of mankind) to Kelly's school today for a class event. Patty and MaryKate visited later in the afternoon while I ran errands. I went to fill one of Patty's prescriptions and instead of being charged the $5.00 co-pay I expected, I was told I would need to fork over $265, because Patty "no longer had coverage." I'm pretty sure this was the first time in my life I nearly swooned. I called Patty, who called her benefits advisor, who informed Patty that for the next two weeks we would need to pay up front, collect receipts, and then submit them for reimbursement. Fortunately, we had just filled a fresh month's supply of Patty's most expensive prescription drug, which runs about $3,000 per month.

Of course, this news was really hard for Patty to tolerate, and she again had a bit of an emotional breakdown. In our lighter moments, we treat all of this as a huge comedy of errors, but when these surprises are fresh they're a bit hard to swallow. Patty has become much more distraught about things that would have previously left her unfazed, and this makes me worry. I do, of course, understand, but I just don't want to add too much anxiety to the burden she already bears. I don't want stupid and, ultimately, insignificant things like broken car windows, flying trampolines or anything else, taking even a moment away from what we've come to love about our life.

I wanted to thank all those who have written or called lately with words of support, including my parents, our friends Shari and Ron, our neighbor and dear friend Denise, and so many others. I also feel gratitude and adoration toward Patty for her kind words about me the other day, although I feel a bit embarrassed, for some reason. I did want to clear the air about something, though, in case there's been any misconceptions. Patty said something along the lines of, "Brian worries that people might misunderstand his intentions," in reference to the nights out I've tried to put together. Please understand that this worry is not based on any actual situations we've encountered during this health struggle of Patty's; this is just the richly neurotic side of me demanding an audience from time to time. Having said this, I appreciate and agree with the comments people have shared. I will keep doing what I can to try to help make this whole bizarre experience a great memory some day, even if we need to beg and borrow (sorry, not steal) to make it happen. Not to sound too sappy, but please pat yourselves on the back for everything you've done to make Patty feel special.

Tomorrow is family night #2. Connor has picked chili, hot dogs and mac-and-cheese, followed by a family game. I'm looking forward to it.

Love,
Brian