Sunday, December 31, 2006
We don't have much to report, other than to say we're situated very comfortably at the Westin River North. We have a very nice room with an incredible view of the Chicago River (seventeen floors below us.) Patty had a very long nap this afternoon while I wandered the streets looking in book and music stores. Now, we're getting ready for our night out. William, the front desk manager, has allowed for a 4:00 checkout for us tomorrow, which should give Patty plenty of time to recharge her batteries. I'll try to provide an update in the morning. Until then, please have a safe and happy New Year's Eve.
On Friday, Patty submitted data from her pacemaker/ICD, via phone, to Edward Hospital. An hour or so later, the technician called back to share the findings with Patty. Two events were flagged by the software. First, in late November, Patty narrowly missed receiving another shock from her ICD when her heart went out of its normal rhythm; Patty remembered this event, because she felt suddenly and severely dizzy.
The second event was a 58-minute period during which the top part of Patty's heart was beating out of sync with the bottom. Although this does not result in a shock, it is apparently a source of concern because it can be a factor in dangerous clotting. We expect that Patty will be tested further to determine what, if anything, this means in terms of her care.
P.S. Here's another photo from last night. About 15 minutes later, Patty went into her "deflation" mode and we hurried back to the hotel.
After dropping Devin and Colin at the airport yesterday (they are now safely back in Canada), Patty and I headed downtown for two special, deeply discounted evenings to bring in the New Year. Our first night, at the Hard Rock Hotel, was fantastic; we were given a very nice, large room at a fraction of its regular cost. Our contact at the hotel, Onya, worked very hard to make sure we were taken care of.
Last night, we had dinner at Brazzaz, a Brazilian steakhouse we had enjoyed on a previous trip into the city. We ate small portions of several varieties of beef, chicken, shrimp, pork and, as mentioned, lamb. Neither of us are fans of lamb, but we gave it a shot, anyway. The dinner was great, although the atmosphere was a bit more chaotic than I had remembered.
In my humble opinion, Patty looked smoking hot. It seems that there's no amount of sickness that can keep her from looking radiant. Having said this, Patty's limitations can become suddenly and dramatically apparent. Last night, Patty was energetic for much of the evening, and then rapidly declined to the point of utter fatigue. She fell asleep while I tuned into the documentary Jesus Camp. She does seem strong this morning, though, so I guess sleep was the needed tonic.
Today, we may catch a movie (I've been dying to see Pan's Labyrinth, which is playing only in three cinemas in the Chicago area), and will then move our road show to the Westin River North. Their front desk manager, William, has contacted us with an offer of personal support for anything Patty needs; he has even visited the blog. Tonight, Patty will be the guest of The Tragically Hip, a band that has been huge in Canada for years, at the House of Blues New Year's Bash. They have given us aftershow passes, which should enable us to meet the band; of course, our activities will be determined largely by our patient's stamina.
I wish so much Patty did not have to experience the sudden declines in her energy, but just love those stretches in which she is so full of life and strength. We'll hope the New Year brings us more of the latter.
Friday, December 29, 2006
I became a bit worried last night, because Patty's breathing became quite labored, much as it had just before she was first put on milrinone. Today, things seem to have improved, although Patty hasn't really been moving around much. I suspect we'll find she'll be needing the milrinone pump and bag again in the very near future. I'll keep you posted...
Thursday, December 28, 2006
Okay, this is going to be a bitchy posting; apologies are hereby being offered in advance.
Yesterday, our family stayed at the Holiday Inn Elmhurst, where the Mayan Adventure Indoor Waterpark is housed. We had a great time, and are again grateful to the management of the hotel for making it so easy for us to visit. Patty was even able to swim and use the water slides because she doesn't currently have the milrinone bag and she does have a handy gadget that protects her arm. Of course, her endurance was both minimal and impressive, depending on how you choose to see things. I was fairly impressed. This ends the non-bitchy part of this blog entry.
This morning, and for reasons we've not really defined, most of our family members seemed to be on each other's last nerve. Even when we sought out Greek food for our family fun day (and I almost put the word fun in quotes, just this once), we just didn't seem to capture the magic we had in previous weeks. I think everyone was tired and overwrought from the days before, and the frayed edges have been painfully evident throughout the day. To be honest, I now know I was somewhat insensitive in my planning of this week; in retrospect, I see my expectations as hauntingly reminiscent of Clark W. Griswald in National Lampoon's Vacation. As today progressed, this feeling was reinforced; I could tell that I had stretched Patty to her limits.
After we left the hotel today, we sought out Greek food for lunch and then stopped in for an abbreviated visit at Kevin's home in Oak Park. Patty had been dragging for much of the day, and pretty much decompressed in short order during our visit. She fell asleep within minutes, awakened for a few moments, and just could not pull herself out of a stupor. It's moments like this -- where it becomes so readily apparent that Patty just doesn't have the strength of a healthy person -- that are among the hardest to observe.
In summary, Patty was barely staying awake, we were both feeling overwhelmed by the battles with our children (one that happened while we were visiting), and the ride home seemed to be a chore best put behind us. We ended up packing up our brood and hitting the road on embarrassingly short notice. We owe one to Kevin and Sharon, and to their other guests, for being gracious while we were being mental basket cases.
To give you an idea about why this message is bitchy--in the time I've been writing this, Patty and I have adjudicated three major battles between the kids. This has truly been one of those days. Next family fun day will be a better one, I'm sure. And hopefully tomorrow will bring a sunnier posting.
Tuesday, December 26, 2006
Although we've had a fairly hectic holiday so far, I felt like I couldn't go the whole break without a turkey dinner, so we tackled that today. I realize that this seems a bit over the top, given that we had a huge beef dinner two nights ago. I'm planning to shave off some pounds in early 2007, so I want to get my excesses in while I can. Kelsey, PJ's girlfriend, joined us for dinner.
The preparation for the meal, the consumption of said meal, and the cleaning up after the feast occupied much of the day. We have been relaxing in our family room this evening, and expect to turn in a bit earlier than usual tonight. Tomorrow, we have been given a too-good-to-refuse deal at the Holiday Inn Elmhurst; this is the waterpark hotel we visited in the summer.
Patty has been feeling quite fatigued the past couple of days. As we have mentioned, we think the absence of milrinone is a factor; also, the patient may be pushing herself a bit too hard these days. All in all, though, she still seems to be holding up pretty well.
I will try to post some pictures over the next couple of days. I've been teaching myself the features of the new camera, and have not been thrilled with my results thus far.
Monday, December 25, 2006
I think our family is insane. Here's evidence:
At 9:30, Devin and PJ let us know they were hungry. PJ settled for some leftover pasta of mine (a portion much larger than he could eat), and Devin opted for some hummus and pita chips. However, Devin wanted to know if there was only the one variety of hummus available, because he thought it would be nice to "comparison eat" several types. Are we the only ones who don't have a back-up hummus variety in the fridge at any given moment?
At around 11:30pm, Patty yelled at the children to settle down and go to sleep. Her voice had an edge of true exasperation, because the noise they were making upstairs was preventing Patty and I from concentrating on Rudolph the Red-Nosed Reindeer. I'm not kidding.
Earlier, Connor asked if he could come downstairs for something to eat -- as long as it was something hard, and "NOT more candy." He could not come up with any rational definition of what kind of hard food he was desiring, and apples seemed to just barely have appropriate hardness. Shortly thereafter, Kelly explained that when Connor was asking for something "hard" to eat, he meant chicken.
Kelly then came down to retrieve apples for herself and the other kids. She was fine with being the point person, until we threw in a wrinkle that was, in her opinion, ridiculously unfair. When we suggested that perhaps she could tell the boys that we had both MacIntosh and Granny Smith apples, her answer was, "Well, then just forget it! I'll just get one for myself and they can come get their own."
I'm fairly certain that we've become the poster children for truth stranger than fiction.
Today was a wonderful day. Patty was worn down, as you might expect; she took two rather lengthy naps today. I'm going to keep things brief for tonight, but will write tomorrow at greater length. I suspect many of you will be reading this on December 26, anyway. As I am writing this, we've had only 13 visitors to the site today; our average is just under 50 per day. We really are having a fantastic Christmas. I hope all of you also had great days with your loved ones.
Sunday, December 24, 2006
I said that I would try to write again this evening. Before I share any other details, I should explain the "gloom" I reference in the title, and the "rescue" to which I allude. As most of you may know about me by now, I am joined at the hip on one side with Patty, and on the other with my digital camera. At times, Patty must have the patience of Job, because she literally faces the lens dozens of times each and every day with only a minimum of protest. I rarely leave the camera at home, because I fret that something important will happen and I'll have nothing tangible with which to recall the moment.
This brings us to the gloom. When we left the party tonight, I did remember to bring along my one "hip"; Patty was in the car for the trip home. However, I somehow managed to leave my camera behind. About half-way home (30 mins into the drive), Patty asked if I had remembered it, and a pall fell over the car. To hear me describe the situation at the time, Christmas was officially ruined. I tried to keep my mood light the rest of the way home, but I just felt distressed that I wouldn't have any photos of Christmas morning.
Okay, on to the rescue. After we arrived at home, Patty had a pow-wow with the children, and they decided together that I should open just one of my gifts. When I opened the box, I found an amazing gift--a new and improved camera. I had wanted this camera for some time -- in part because of a need within my business, and in part because I want to take the best photos possible of Patty and the kids. I think this is a pretty happy outcome from a fairly distressing situation, don't you?
We enjoyed a wonderful dinner with Patty's extended family tonight. In total, 42 people convened at the Oak Park home of Kevin, Sharon and their kids. The food was amazing, although Patty and I really underestimated the extent to which the collective appetites of the many children had expanded -- we brought far fewer potatoes than we should have. Other than this faux pas, though, the evening was wonderful. Kevin and Sharon clearly put a tremendous amount of effort into planning the evening. What's more, they're preparing a meal for 25 more people (Sharon's clan) tomorrow night. Kudos...you're completely insane, but we love you for it.
I need to wrap this up. At some point, I'll share some of the photos I took this evening. Tomorrow, though, I'll snap and share some pics of our family tearing into gifts. I hope all of you enjoy as special a holiday as we have been having. I'm sure others would challenge me on this boast, but I often believe I am the most blessed person in the world.
When Kelly opted against a dress that PJ wanted her to wear, PJ decided to try on--and model-- the dress. Any chance he might have issues? The bottom right picture, I am told, is PJ's impression of Marilyn Monroe. Whatever...
We're hoping to be able to write again tonight or tomorrow, but just in case we get too tied up with other matters, we did want to drop a quick note to wish everyone a Merry Christmas. We have been busy with food preparation this morning, and (knock on wood) seem to be pretty much on schedule for getting out of here today. We pick Devin and Colin up at the airport at around 4pm, and then head to Oak Park for dinner.
Patty is still experiencing an upset stomach, but otherwise seems well and in good spirits. Please be safe and happy, and feel free to share comments.
Happy holidays; knowing all of you are pulling for Patty has made this year a special one.
Brian & Patty & Family
Saturday, December 23, 2006
I took this photo of Patty last night. I wasn't happy with her efforts at smiling, so I tickled with one hand and snapped the photo with the other. Patty hates the picture; I think it's great.
Today, neither Patty nor I are feeling particularly well. Patty's stomach has been upset since the middle of the night, and she feels very tired. We didn't drag ourselves out of bed until noon today, and I think we may crawl back in for a late afternoon nap. With no kids around, it's a luxury of which we like to take advantage.
This evening, Patty and I plan to run to the grocery store to pick up potatoes for tomorrow's Christmas Eve dinner at Kevin's house. Other than that, we have few ambitions for today. Tomorrow will be a busy day, for sure, so it's probably best for our patient to take it easy.
Friday, December 22, 2006
Well, family fun night took a different turn last evening. Instead of following our regular format, in which only our immediate family participates, we invited Alec and Allison (two wonderful kids from our neighborhood) as the kids' guests. We opted for this because PJ wasn't participating and, well, it's Christmas. Next week, Devin and Colin will be here, and we'll settle back into our insular approach.
After a dinner at Olive Garden, we watched Charlotte's Web. Although there really wasn't anything wrong with the movie, both Patty and I were underwhelmed. I suppose the reason may be that we're middle-aged, and the show is geared toward a younger set--it's amazing how quickly cute can erode into saccharin. The children enjoyed the movie, though, so it wasn't a waste. Later in the evening, Patty and I watched Little Miss Sunshine. I was too tired to fully appreciate its many merits, although I'm sure I will enjoy it much more in a second viewing. Patty, on the other hand, was by turns rolling on the floor laughing and bawling like a baby.
Today, we had an appointment with Dr. Costanzo. This visit was about as routine as they get. At some point, Patty will likely be put back on milrinone, and she has been prescribed an as-needed diuretic to combat some mild swelling and breathing issues. Later in the day, we heard back from Edward Hospital, who confirmed that Patty's routine labs came back normal. Overall, Patty seems to be doing well right now, all things considered. We're of course ever aware that this may just be the calm before a whole new variety of storm, but it's nice to hear people commenting as to how healthy Patty looks (she really does.) Please keep your fingers crossed that she'll stay this strong throughout the holidays; I've never seen Patty so excited about Christmas.
Tonight, we're kid-free, so we're settling in with a bunch of television shows, some candles and a fire. Somehow, we have managed to find four programs that we really want to see, all of which overlap at some point. What's really pathetic is how distressed we are about it. To solve the problem, we have considered recording two programs on the DVR on the main floor, and watching the two others upstairs. Pathetic, isn't it?
Thursday, December 21, 2006
Today, much of our household was occupied with wrapping presents for Christmas. Although the photo shows our patient hard at work, she mostly dodged the bullet this year. Kelly tackled all of the O'Mara family grab bag gifts, and I handled many of the kids' presents. Although we exercised some fiscal restraint this year, you'd never know it by looking under our tree. It sure looks like a lot. I'm so happy for the children. Even though we don't have any really young kids in our home anymore, we can still tell our brood is excited.
Tonight will be family fun night again, and this time around I'm calling the shots. Our plan for this evening is to go for dinner at Olive Garden (one of Patty's favorite haunts, particularly since her stomach became a challenge) and then go to the movies to see the new Charlotte's Web. Unfortunately, we'll miss Patrick tonight because he'll be attending a Christmas gathering at the home of a teacher. Next week, we'll have Devin and Colin team up on a family fun night, since it's impractical to work them into any sort of rotation.
Today, Patty is feeling pretty well. I'll write again later if I get the chance.
Wednesday, December 20, 2006
Patty started this morning feeling very nauseous, with a strong headache. She slept through much of the morning, and had a decent nap later in the afternoon. She seems much more energetic this evening. The absence of milrinone has been a bit of a mixed blessing, as far as I'm concerned -- Patty feels more like a real person, especially in public, but it seems like she's forever fatigued.
The kids are now off until January 3, so we'll have loads of time to spend with the children. You'll recall I mentioned mixed blessings?
Today was another day in which we were the beneficiaries of more incredible generosity from Patty's ever-growing army of guardian angels. At the end of the school day, we picked up Connor, fourteen wrapped packages from our local Old Navy (two for each member of our family) and a check from the staff and students of Churchill Elementary.
I feel a bit embarrassed to say this, but as we pulled away from the school, I broke down. Thankfully, I've spared myself and others this scene much of the time, but I let one get away from me. Much of the emotion was simply awe at how kind people have been to us, and at how Patty remains in the thoughts and prayers of so many. The darker, more selfish side of me was, I think, feeling sorry for myself -- I just don't want my wife to be sick anymore. I will say, though, that more than at any other point in my life, I am feeling a much more profound sense of what Christmas is supposed to be. I know that Patty echoes these exact sentiments.
Connor is hosting his friend Alec for a sleepover tonight; they are hard at work making sure XBox remains a popular gaming platform. Kelly is completing a gingerbread house; it looks great, and fulfills a decorating wish Patty has held for a few weeks now. PJ has been helping his mother with a seemingly endless stream of small requests. Patty and I are sitting around being slugs. All is well in the world.
Kelly the builder
Tuesday, December 19, 2006
Sorry to be so entirely boring, but we had yet another relatively low-key day today. We did, however, manage to get haircuts, so we'll once again be the best looking adults at the family Christmas gathering. It seemed like it was pretty much a slam-dunk, anyway, but we wanted to clinch it; beauty can sometimes be such a burden. Anyway, here is a photo of our nicely coiffed heads. Please feel free to frame copies and display them in your homes.
From three different sources within the school district (and many individuals comprising those sources,) we have been given very generous gifts in this week prior to Christmas. We can only begin to express our gratitude for these and the many other acts of kindness with which we've been showered this year. To all of you who have contributed to these gifts, please accept the thanks of our entire family.
The only things we expect this week on the medical front are some results from the bloodwork of last week, and a routine appointment on Friday with Dr. Costanzo. If anything comes of these discussions, we'll of course be sure to share.
Monday, December 18, 2006
There's little to report from today or tonight. Patty and I went out for a couple of hours in the afternoon to tackle some Christmas shopping, and then I repeated the process tonight with the children. Patty and I have a goal to get all the wrapping and such finished days in advance of Christmas, in the hope Christmas Eve will be a mostly relaxing experience. Of course, we're delusional, but everybody is entitled to a ridiculous dream or two.
Patty did experience a few irregular heartbeats today, and continues to be somewhat breathless and quite sore in her muscles and joints; other than that, though, she is holding up pretty well.
Tonight, Patty and I are watching the TV movie "A Perfect Day"; we're not far into the movie, but so far it seems bearable.
And that's our day...exciting, no?
Sunday, December 17, 2006
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.
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!!
Friday, December 15, 2006
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.
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.
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.
Thursday, December 14, 2006
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.
Wednesday, December 13, 2006
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.
Tuesday, December 12, 2006
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...
Monday, December 11, 2006
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.
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.
Sunday, December 10, 2006
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.
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.)
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.
Saturday, December 09, 2006
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.
P.S. I decided against posting pictures of our little "discovery" this afternoon -- you're welcome.
Friday, December 08, 2006
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.
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.
P.S. Patty thinks my comments to Bears and Sox players are strange; clearly, she doesn't understand what's REALLY important in life.
Thursday, December 07, 2006
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.
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.
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
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.
Wednesday, December 06, 2006
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.
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.
Tuesday, December 05, 2006
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.
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.
Monday, December 04, 2006
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!!!
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...
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.
Sunday, December 03, 2006
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 ...
Saturday, December 02, 2006
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.
Packing up leftovers - how's that for fascinating?
Friday, December 01, 2006
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.
Thursday, November 30, 2006
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.
Wednesday, November 29, 2006
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.
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.
Tuesday, November 28, 2006
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."
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?
Monday, November 27, 2006
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.
Sunday, November 26, 2006
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.
Saturday, November 25, 2006
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...
Thursday, November 23, 2006
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.
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.
Wednesday, November 22, 2006
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.
Tuesday, November 21, 2006
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.
Monday, November 20, 2006
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?
Sunday, November 19, 2006
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.
Friday, November 17, 2006
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.
The band in action
Wednesday, November 15, 2006
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.
Tuesday, November 14, 2006
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.
Monday, November 13, 2006
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.
Sunday, November 12, 2006
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.
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?
Saturday, November 11, 2006
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.