Wednesday, February 28, 2007

A good day for Patty

Hi everyone:

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

Love,
Brian

Tuesday, February 27, 2007

Nausea, disappointment, impatience, neediness

Hi everyone:

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

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

Love,
Brian

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

Monday, February 26, 2007

Waiting, and waiting, and waiting

Hi everyone:

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

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

Love,
Brian

Sunday, February 25, 2007

And now for something completely different...

Hi everyone:

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

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

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

Love,
Brian

Saturday, February 24, 2007

More of the same

Hi everyone:

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

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

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

Love,
Brian

Friday, February 23, 2007

Better today

Hi everyone:

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

Love,
Brian

Thursday, February 22, 2007

Kelly...Live!!!

Hi everyone:

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

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

Love,
Brian

A rough one

Hi everyone:

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

Love,
Brian

Wednesday, February 21, 2007

Talk with the doc

Hi everyone:

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

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

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

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

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

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

The drama builds...

Love,
Brian

Tuesday, February 20, 2007

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

Hi everyone:

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

Love,
Brian

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

To the doc tomorrow

Hi everyone:

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

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

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

Love,
Brian

Monday, February 19, 2007

Sloth, pure and simple

Hi everyone:

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

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

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

Love,
Brian

Saturday, February 17, 2007

Many memories


Hi everyone:
I was recently flipping through some recent and older photographs; while doing so, I discovered not only that we have taken an incredibly huge number of pictures along the way, but also that most have rich meaning to me and to Patty. Should you show them to Patty or I, you may fall victim to a very long and tedious story (or stories.)
For example, the second photo in the second row is of me with our nephew Ian, during a vacation our family took in Canada; I hadn't seen Ian in some time, and yet he was an entirely natural extension of our normal crew. The fifth picture in the fifth row shows Kelly at her first communion. On that day, she was, far and away, the most beautiful little girl in the world. Row five, photo two was from one of several special visits to Lake Geneva; Neil, Patty and I acted like little kids for several days running.
Anyway, I cropped out pieces of several images that caught my eye, and threw them together in this array. Please don't take offense if you don't see yourself here; I will likely make similar collages several times in the future, when I have the opportunity to further immerse myself in our library of snaps.
To see the image a bit more clearly, click on any spot on the picture and a larger version will appear.
Love,
Brian

A busy Saturday

Hi everyone:

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

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

Love,
Brian

Friday, February 16, 2007

Family Friday

Hi everyone:

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

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

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

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

More soon...

Love,
Brian

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

Thursday, February 15, 2007

Love & respect (a personal note)

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

Love,
Brian & Patty

A documentary worth checking out

Hi everyone:

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

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

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

Love,
Brian

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

Five Years



Hi everyone:

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

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

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

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

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

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

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

Love,
Brian

Wednesday, February 14, 2007

Still struggling

Hi everyone:

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

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

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

Love,
Brian

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

Tuesday, February 13, 2007

A little better

Hi everyone:

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

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

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

Love,
Brian

The beat goes on

Hi everyone:

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

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

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

Love,
Brian

Monday, February 12, 2007

Miserable Monday

Hi everyone:

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

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

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

Love,
Brian

Sunday, February 11, 2007

A pic from today

Hi everyone:



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

Love,
Brian

Snowy Sunday

Hi everyone:

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

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

That's it for now.

Love,
Brian

Friday, February 09, 2007

At home and well

Hi everyone:

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

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

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

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

Love,
Brian

Thursday, February 08, 2007

Family night

Hi everyone:

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

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

Love,
Brian

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

Finally!!!

Hi everyone:

Edward Hospital called us late this afternoon to let us know that they will be ready to start Patty's next round of drug treatment at 8:30 am tomorrow. So, after weeks of waiting, and with little fanfare, the final details appear to have come together pretty quickly.
In what I'm sure is not the last irony we'll experience, treatment will take place at Edward's Cancer Center, even though Patty is under Cardiology's wing. If Patty tolerates the drugs well, she may be able to receive future rounds of the medicine from home.

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

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

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

Love,
Brian

Wednesday, February 07, 2007

Status quo (sigh)

Hi everyone:

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

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

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

Love,
Brian

Tuesday, February 06, 2007

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

Hi everyone:

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

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

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

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

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

Love,
Brian

Monday, February 05, 2007

Long night, rough day

Hi everyone:

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

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

Love,
Brian

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

Sunday, February 04, 2007

A quick one

Hi everyone:

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

Love,
Brian

Saturday, February 03, 2007

Concerns...and kudos

Hi everyone:

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

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

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

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

Love,
Brian

Thursday, February 01, 2007

Charades champ

Hi everyone:

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



Did anyone else guess "Damien Thorne"?

Love,
Brian

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

Return of family fun night

Hi everyone:

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

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

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

Love,
Brian