Wednesday, January 31, 2007

Status quo

Hi everyone:

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

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

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

Love,
Brian

Tuesday, January 30, 2007

One from Patty

Hi all:

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

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

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

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

Love,
Patty

Monday, January 29, 2007

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

Hi everyone:

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

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

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

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

Love,
Brian

Saturday, January 27, 2007

Waiting and waiting

Hi everyone:

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

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

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

Love,
Brian

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

Friday, January 26, 2007

A whole lot of nothing (again)

Hi everyone:

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

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

Love,
Brian

Thursday, January 25, 2007

Yawwwwnnnnn!!!

Hi everyone:

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

Love,
Brian

Wednesday, January 24, 2007

Grabbing some fresh air

Hi everyone:

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

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

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

Love,
Brian

Tuesday, January 23, 2007

A call from Edward Hospital

Hi everyone:

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

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

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

Love,
Brian

Monday, January 22, 2007

315 and counting

Hi everyone:

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

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

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

Love,
Brian

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

Sunday, January 21, 2007

An arrival...and The Departed

Hi everyone:

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

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

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

Love,
Brian

Saturday, January 20, 2007

Further adventures of the walking enigma

Hi everyone:

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

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

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

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

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

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

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

Love,
Brian

Thursday, January 18, 2007

Aches and pains

Hi everyone:

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

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

Love,
Brian

Wednesday, January 17, 2007

This is spinal tap

Hi everyone:

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

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

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

Love,
Brian

Moving toward some answers (hopefully)

Hi everyone:

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

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

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

More soon...

Love,
Brian

Photos from PJ's birthday

The remodeled cake



Kelsey & the Birthday Boy

Tuesday, January 16, 2007

Sixteen candles...

Hi everyone:

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

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

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

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

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

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

Love,
Brian

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

Sunday, January 14, 2007

Surprise, surprise

Hi everyone:

Last night, my amazing wife threw a surprise 40th birthday party for me, with close to 30 guests. I had been told that a handful of our neighbors would be dropping by; I was amazed when I walked into a crowd of family and friends in all the rooms of our main floor.

I really had a wonderful time, and was able to catch up with several people with whom we have had little recent "live" contact. Thank you to everyone who participated, and a special thank you to all who helped Patty plan and prepare for the bash. I really was quite flattered and touched that so many people came out to help us celebrate.

As you might expect, the pace in our household today was much less chaotic and energetic than the atmosphere of last night. Patty, Neil and I watched the Bears game (and wasn't THAT a nailbiter), and then we all settled in for naps. Tonight, our plan is to watch a movie or two and then call it a night. Patty has been somewhat breathless today and, as suggested, she was very fatigued, but she fared pretty well otherwise, especially given the amount of work she tackled over the past few weeks and days. She's a great and special friend to me.

Love,
Brian

Dad & Connor



Groupies (okay, okay, it's Heather and Laura)



Party planner extraordinaire



Friday, January 12, 2007

Adventures in dorkhood

Hi everyone:

Patty continues to be fever-free, although the extent of her fatigue is at times unsettling. For example, I ran an errand with Patty to Home Depot, and had to rescue her because she was becoming overwhelmed by the weight of a 12-pack of toilet paper. At moments like this, I feel bad for Patty, because I know she's embarrassed and frustrated at such limitations. However, when we choose to look at such situations in a sunnier light, I find myself imagining the "Marris" character from Frasier. We're planning to take things easy tonight, in the hopes of having some energy for a kid-free weekend.

When we retired to bed last night, Patty experienced a stretch of breathlessness and heartbeat irregularity that was quickly becoming frightening; I was convinced she was going to get a shock from her ICD. There seemed to be no stimulus for the event. Had the problem persisted, I would have insisted on a trip to the hospital; fortunately, it seemed to settle down on its own, and we settled into a decent night of sleep.

When Patty's heartbeat is irregular to the extent it was last night, I alternate between feeling for her wrist pulse and putting my ear against her chest. I have somehow convinced myself that I can detect anomalies, and should therefore have up-to-the-minute stats. In reality, I'm sure I am hearing things that aren't there, and missing things that may have meaning. Each time I listen through her ribcage, though, I keep having this mini-phobia that the device is going to fire with my brain just inches away. In response to this fear, I sometimes listen in two-second increments, in the belief I am reducing the odds of leaving my head there for a shock. Alternatively, I sometimes half-rest my ear on her chest, so that if I sense a need to make a split-second escape, I'll already be partially in flight mode. I am such a dork.

Love,
Brian

Thursday, January 11, 2007

Happy Birthday to Colin

Hi everyone:

Colin turned 15 today. Happy Birthday, my peeps.

Patty and our friend Denise went out shopping for a while today, and I tackled a few errands of my own through the middle part of the day. Later in the day, I installed some window blinds that have been sitting in our bedroom closet for several months (actually, I think they've been stored for more than a year.) Patty then put up some sheers that had also been gathering dust in our closet. Our bedroom looks pretty nice as a result of our labors.

We're still waiting on word from doctors about when and how we'll get Patty's treatment ramped up again. Her muscles and joints are sore, she has frequent hot flashes (menopause, perhaps?) and she is still breathless much of the time when she at all exerts herself. Nearly every day, I have one moment or several when I simply cannot believe any of this is happening.

Love,
Brian

Wednesday, January 10, 2007

A bad night, but a better day

Hi everyone:

Patty's fever last night climbed as high as 102.4, but seems to have pretty much disappeared today. She is very short of breath--even more so than usual--but otherwise seems much more alert and energetic. The picture to the right testifies to the change in her condition. I'm not saying she's in tip-top form--in fact, the breathing issues make me especially anxious--but the fevers always seem to knock Patty off her feet, so their departure is always welcome.

Patty is pulling me away from my Visual Congruence marketing efforts to help her with a variety of much-neglected home cleaning projects, so I need to keep this brief. Of course, I'd love to find excuses not to do the jobs (e.g., taking glassware off cabinets, washing it, and then putting it back atop the cabinets), but if I don't participate, she'll do the jobs anyway and will wear herself out. As it is, I'm trying to get her to adjust her pace, but if you know Patty, you'll know what I'm up against.

Love,
Brian

Tuesday, January 09, 2007

Another day of poor health

Hi everyone:

Patty is feeling terrible again today, with a low-grade fever (100.6 at its worst, so far), sore muscles, aching joints, headache, mild nausea and profound fatigue.

We called Dr. Costanzo's office, as a precaution; we suspect that, in this instance, the symptoms are related to the bug that has plagued our home of late, and not from anything more severe (e.g., blood infections.)

This morning, shortly after we awakened, I was a bit distressed when I put my head to Patty's chest (another obsession of mine in our post-MI era) and it seemed like her heart was racing. Fortunately, her heart rate seemed to settle down within a few moments.

Dr. Costanzo is out of the office today, so we were told to watch Patty's symptoms and call again tomorrow if her fever persists. Patty has slept for most of the day; this seems to be a blessing, because each time she awakens she feels as bad or worse than during her last waking period.

More soon if there's more to report...

Love,
Brian

Monday, January 08, 2007

The bug invasion persists

Hi everyone:

Both Patty and I are feeling under the weather today; consequently, neither of us is accomplishing what we had hoped to tackle. We blame the bug that has been jumping from one family member to another. Patty seems especially short of breath whenever she attempts anything too ambitious (which, if you know Patty, is too often the norm.) Right now, she's reclined on the sofa and writing out thank you cards.

Yesterday, we had a nice evening out as a family (dinner and a movie, as planned), although the residual effects of a week of illness seemed apparent during an uncharacteristically quiet meal. Patty and I were in bed by 10pm, and fell sound asleep in short order. Given our current state, I suspect this evening may also have an early finish.

Love,
Brian

Sunday, January 07, 2007

A sore throat for Patty, a sore loser for a husband

Hi everyone:

Today, Patty is suffering from an intensely sore throat; the discomfort is bad enough that she's not really aware of other symptoms we often anticipate. As most of you know, Patty takes several pills, several times each day; the soreness has made this a pretty unpleasant task. We think the chain of illness started with Colin and gradually made its way through our family; I'm the only one who seems to be largely unaffected (so far.) Hopefully, Patty will overcome the bug before it gets any worse. The unfortunate reality of Patty's overall health is that what might not be a big deal for most could quickly become a real problem for our patient. The last thing we want right now is a hospitalization for a cold.

Kelly had a sleepover last night, which meant that we were still pushing kids to settle down until the wee hours. In addition, Patty seemed to have a rare extra burst of energy last night, so we sat up talking and watching true-crime shows on TV until almost 5am. The phone started ringing less than two hours later, and I couldn't get back to sleep because I kept convincing myself that Patty's pulse was weak and that her skin was cold. This constant need to check that Patty is okay seems to be a habit I may never shake. Needless to say, on only a couple of hours of sleep, I've been a bit foggy today; perhaps we'll wrap things up early tonight.

Our plan for this afternoon is to go to a movie (Pan's Labyrinth...again), and then grab dinner, most likely burgers at Red Robin. This morning, the kids brought me breakfast in bed -- an omelette and potatoes, both of which tasted amazing. Clearly, we have some budding chefs among our brood. My plan is to start working on shaving off some pounds, starting tomorrow, so I'm making a special point of treating everything I eat today as though it's my last meal.

I attempted to bake a birthday cake today. I had helped Kelly a couple of weeks ago with a bundt cake project for school, and somehow convinced myself it would be, well, a piece of cake. Patty's vote was to purchase a finished cake, but I pooh-poohed that idea, because I thought this might be a nice undertaking with the kids. Alas, I was laboring under the misconception that each half of a double-layer cake required its own cake mix, so I ended up with sloppy, pineapple-flavored lava all over the bottom of the oven. The experience left me feeling a little crabby, to put it mildly. It also left us cakeless. Patty has decided that we'll be picking up a cake on our way home from our outing today.

Love,
Brian

A colleague's tragedy

Hi everyone:

As you know, Patty's work colleagues (among so many others) have time and again assumed the role of guardian angel to our family. Some of the generosity and kindness has come from those who know Patty well; in other cases, we are finding we have dear friends we have yet to meet. In some cases, our protectors are stepping in not so much because they know (or know of) Patty, but because one of our children has left a positive impression. We also know that our kids have been influenced in a very positive fashion by many teachers who have helped them along the way.

When Kelly came home on her first day of school after the holiday break, she was clearly unsettled by news she had heard earlier that day. Sandy Campanaro, a teacher at Kelly's school, lost her husband Frank and daughter Olivia in a car accident on December 27. Ms. Campanaro's other daughter Alex was injured but thankfully is expected to make a full physical recovery.

Although Ms. Campanaro has never been Kelly's teacher, she nonetheless left a strong impression on Kelly as being a kind and warm person. It's hard to imagine events that could be any more tragic and unfair. Please include this family in your thoughts and prayers. If you would like to make a contribution to help the family, a fund has been established at the following bank:

“The Sandra Campanaro Family” Fund - Oswego Community Bank
Oswego Community Bank
10 S. Madison Street
Oswego, IL 60543
554-3411

OR

Oswego Community Bank
Boulder Hill Branch
89 Boulder Hill Pass
Montgomery, IL 60538
844-3800

Love,
Brian

Saturday, January 06, 2007

One from the new camera

Hi everyone:

I've been slowly acquainting myself with my new camera (a Christmas gift), and so far have been dissatisfied with many of the photos I've taken. This, however, is a pleasant exception. I think I'll be having this one framed.

Love,
Brian

Tit for tat

Awaiting answers...and still worrying

Hi everyone:

I'm sorry for not writing yesterday, and for being so brief with my recent commentaries. Over the past few days, we've either been running around or hosting visitors to our home, so I haven't been sitting in front of the laptop as much as I normally do. To be honest, not much of interest has transpired, but I still feel like I've missed out on something when I can't squeeze a blog entry into my day.

We have packed up most of our Christmas decorations, and have taken down and stored our tree. For all the excitement that precedes the holidays, much of the time that follows seems surprisingly anticlimactic, does it not? I will say, though, that this Christmas was a very special one for our family.

Patty has continued to struggle with her breathing, and with her energy levels. She has also experienced some strange heart rhythms, although they rarely last for more than a few seconds. I keep hoping Patty's doctors will get back to us soon, because I'm worrying incessantly about her condition. I realize that these cardiologists are worried about more than one heart, and thus we cannot demand their constant attention--but, man oh man, I just wish they would come up with answers that represent real progress in making my wife better.

Love,
Brian

P.S. These are the last few hours of my thirties...tomorrow, I'll be old like Patty.

Thursday, January 04, 2007

Very busy today

Hi everyone:

All day, I have been addressing computer problems and household maintenance, so I've had no opportunity to write. There's little to report other than that we received a brief email reply from Dr. Costanzo, who said she was collecting information and would be back to us soon. Cindy visited with Patty while I worked. I'll write again tomorrow.

Love,
Brian

Wednesday, January 03, 2007

Addendum

Hi everyone:

It just occurred to me, as I was Googling "thyroid hormone replacement therapy contraindications", that Patty was right on the mark -- things are getting complicated.

Love,
Brian

An odd message

Hi everyone:

While sorting through the mail today, I opened an envelope from the Rheumatology department at UCH, and was a bit surprised and baffled at the contents. Patty was snoozing at the time, so I couldn't even discuss them with her for some time. In handwriting atop a printed summary of medical results, I read, "Anti-thyroid antibodies / Hashimoto's thyroiditis; accounts for positive ANA." Huh? When were we going to be called about this?

When I delved deeper into the numbers themselves (or at least the ones highlighted as anomalies), and with the help of several web sites, I was able to extrapolate that the recent blood tests point to hypothyroidism as one of Patty's problems. We have not heard anything more from doctors, but this message sure got us moving on another note with lots of questions.

The online literature on Hashimoto's thyroiditis seems a bit hard to interpret, at least in terms of what it may mean for Patty. On paper, it doesn't sound like a big deal, but there are no "little deals" with our patient, it would seem. I did find some evidence to suggest that hypothyroidism and lupus are sometimes bedfellows, so we don't know if this new information really tells us anything new, in terms of Patty's future. I will say that I was a trifle unsettled when I read that hypothyroidism can be problematic for those who are prescribed prednisone, a major drug in most post-transplant regimens. Of course, I'm probably reading too much into what I'm scanning from pages, so I'll stop this for now.

Patty was tired all day. She continues to experience sore muscles and joints, shortness of breath and stomach discomfort. We wrote to Dr. Costanzo today, asking her to consider putting Patty back on milrinone as soon as possible. We'll be sure to share whatever feedback we receive on all of the above.

As I was writing this, Patty offered, "Wow, this is getting pretty complicated, isn't it?" I concur.

Love,
Brian

Monday, January 01, 2007

Recent photos

Hi everyone:

Here are a few pics from the past couple of days:

One view (Michigan Avenue) from our room in the Hard Rock Hotel



Out on the town Saturday evening



Patty on New Year's Eve



A view of the river from our room in the Westin River North

HAPPY NEW YEAR!

Hi everyone:

Last night, Patty and I brought in the New Year at the House of Blues; for the second night, Patty was elegant and energetic, and was the life of the party. The Tragically Hip performed, and even sang Patty's favorite of their songs, Wheat Kings, a number they rarely perform in the U.S. We were given aftershow passes, but finally had to pull the plug on waiting to meet the band, because Patty ran out of steam. We were grateful to the band's management company for the tickets, but felt a bit disappointed that the band itself didn't make more of an effort to accommodate Patty. That's all the complaining I'll do, because we really did appreciate the free tickets to an expensive show.

We met several Canadians over the course of the evening, which felt a little like getting a brief glimpse of the homeland, and as such felt oddly poignant. We returned to our room, exhausted, at around 3am, and didn't budge from bed until the late morning.

Today, we took in a film, Pan's Labyrinth, the release of which I have been eagerly anticipating. On Rotten Tomatoes, the film scores a 99% "fresh" rating, one I feel it richly deserves. I was blown away, and Patty thought it was a very good film. In some ways, the movie feels like a kids' flick, except that it has some over-the-top violence; somehow, this ends up feeling like a strong and important distinguishing quality. I just love to see movies that actually make you feel like you've gained something by watching them. This, sadly, is a rare occurrence, but one we enjoyed in spades today.

I'll share some photos tomorrow. We hope all of you had a wonderful New Year's Eve, and that this year is a great one. Thank you again for everything.

Love,
Brian