Saturday, March 31, 2007

Saturday (a slow one)

Hi everyone:

Patty is well today -- no headache and no nausea. We've been pretty lazy today, but have plans to go out tonight for a bite to eat and to watch an as-yet-unchosen flick (perhaps Zodiac?) We saw Connor briefly today when he popped in for the Bears Fan Convention tickets; it was nice to see him. And that's our day, so far. Exciting, n'est pas?

Love,
Brian

Friday, March 30, 2007

A nice visit, and a resurgence of crappy health

Hi everyone:

The picture to the right pretty much tells the whole story about how Patty is feeling today. From the time she opened her eyes this morning, she has been tormented by a crushing headache and associated nausea. This has become a familiar refrain -- from Patty's point of view, I think it's far too familiar. She stayed in bed almost until noon, and still isn't feeling better. I suspect this will be a day of limited activity, unless of course Patty makes a surprising turnaround.

Last night, we were visited for a couple of hours by Emily -- a former student of Patty's who I've always thought was like my little sister, or perhaps an unofficial niece -- and her girlfriend Amanda. Emily was one of a group of students who were, individually and as a group, remarkable. Brad, Joy, Nate, Sean (now Roxie), Jennifer and others were among the first students whose artistic talent I saw Patty nurture, and they in turn made Patty feel very valued as a teacher. I respect them, and I admire Patty for her part in helping them grow.

We don't have specific plans for the weekend, other than to relax and let Patty recover. Steve still has the three kids until Sunday evening. The Chicago Bears were kind enough to offer us tickets to the sold-out Fan Convention downtown this weekend. Patty is not up for a long day like that, so Steve, the kids, their uncle and cousin are planning to go. Given the disharmony in the Bears organization these days, this could be quite a show.

That's all for now...more later if there's more to share.

Love,
Brian

Amanda, Emily, Patty



A short walk yesterday afternoon; we cut it short because Patty ran out of breath, but did another short walk later at night

Thursday, March 29, 2007

Now that's better

Hi everyone:

Patty is feeling much better today, and has been pretty energetic. She is still experiencing breathlessness, a problem that had been largely absent for several months until its reappearance a few days ago; thankfully, though, even these symptoms have been milder.

With the added energy came some real industry. Patty grabbed the phone and tackled a number of nagging matters, including a call to my health insurance company to find out why they arbitrarily bumped up my health premium by nearly 40% (and in the process drove our combined monthly premiums dangerously close to four figures...ouch.) Patty plays "bad cop" much better than I can, although she didn't win this particular battle.

Today, we heard back from one of Patty's doctors, who suggested that she would like Patty to undergo one more round of the Rituxan/Cytoxan, and then perhaps consider total lymphoid irradiation. We're waiting for the doctors to talk to one another so that we can establish a more complex plan of action based on more concrete information. Patty has said she will consider it if they can explain to her why the recent results are "encouraging", particularly when previous measures (e.g., late last year) seemed much more so.

The doctor also commented on the whole issue of adult stem cells, which is apparently a significant interest of hers. Her position was that while there has been some research that has been encouraging, and some case studies that seem very optimistic, she has ultimately found many more reasons to be skeptical than enthusiastic. She explained that many of the success stories do not continue to show success over time, and several tests have yielded few positive outcomes. She did say that this is an area worth watching over time, but that we should not include it in our hopes for Patty. We will keep considering this and any other ideas, so please feel free to share whatever you see and hear; you never know...

Love,
Brian

Wednesday, March 28, 2007

Better...but far from perfect

Hi everyone:

Patty is feeling better today than she was yesterday, although she continues to have a moderate headache and is rendered breathless and weak by nearly any activity. Were you to hear her in this state, you'd be alarmed; I know I was -- even more alarmed than I was when I suffered through the film Rocky Balboa the other night, or when I experienced a commercial for Super Colon Cleanse (for real).

Of course, Patty's inability to breathe didn't prevent her from cleaning the kitchen and doing other household chores while I was out running errands this afternoon. She just asked me to include that she feels more like a real person, with real value, when she can actually accomplish something. To keep me from nagging, though, she is now relaxing on the sofa and hoping her headache will hasten its departure.

We're in a holding pattern now, as we await word from Patty's doctors about next steps. The sense we're getting is that they will push Patty toward doing more rounds of chemotherapy, based again on this supposed "success" in reducing the antibodies up to now. Our position, at least at this moment, is that we want to first hear a good argument for continuing this therapy; for example, if we hear that the second PRA number (100%) is not significant, and that only the first (58%) is, then perhaps that would give us a fair reason to talk. This whole realm is just so confusing, and it doesn't help when we're hearing second-hand messages. Arghh...

Love,
Brian

Tuesday, March 27, 2007

One more before bedtime

Hi everyone:

Patty is still feeling weak and tired, and through the evening has witnessed a resurgence of her typical post-chemo symptoms. She has had her animated moments, but they keep being chased away by headache or stomach cramps. I suspect we'll be calling our night shortly.

My Toronto Maple Leafs defeated the Carolina Hurricanes 6-1 in a game crucial to their playoff hunt; I realize this means little to many readers of this blog, but it sure provides me a pleasant distraction at times. Patty even gets worked up by the games -- although necessarily less so than usual tonight. With the Leafs flirting with a playoff berth, and with the White Sox regular season fast approaching, there may well be a lot of sports to keep me company while Patty dozes.

Let's all hope for a better tomorrow for our patient.

Love,
Brian

A sad and scary day


Hi everyone:
We received a call today with Patty's latest PRA numbers -- 58% and 100%. These reflect measures after two treatment cycles of Rituxan/Cytoxan. Even though the change is negligible from the previous cycle (60/100), one member of the transplant team apparently regarded the change as very encouraging. To be honest, we find this assessment both odd and a little frustrating. Okay, to be really honest, my first response was to feel a bit pissed off. We suppose there's a more microscopic view of these statistics that is beyond our current understanding, but on the surface they seem very discouraging.
Consider the history of PRA results since they started measuring (around the time Patty was listed for transplant):
June 3/06 65/100
July 23/06 44/95
August 23/06 07/92
October 6/06 65/100 (unconfirmed)
November 6/06 93/100
February 21/07 70/100
March 12/07 60/100
March 27/07 58/100
On September 8, 2006, while undergoing plasmapheresis, Patty's plasma was replaced with human plasma, to the surprise of doctors but in keeping with the "standard" protocol for the procedure. We were assured at the time that it could make no difference in PRA levels (I believe we heard "1 in 10,000"); we may never know for certain, but the change between August and October is a bit curious. Even so, the 92% on August 23 still suggests we were looking at a long shot. Based on the complete history, including these recent results, it will take some convincing for us to see these numbers in a positive light.
Okay, now that I've covered off the sad portion promised in the title, let's turn our attention to the scary part. Patty started the day feeling markedly better than she had felt on Sunday or Monday. She did have some mild nausea upon awakening, and she still had traces of headache, but overall was seeming much more like her normal self (why do I always want to put "normal" in quotes?) Alas, the happy part ends here. Late in the morning, Patty was in the shower when she suddenly felt very shaky and weak, enough so that she needed to cut her shower short. She also started having difficulty catching her breath, even while sitting still. I checked her blood pressure, which ranged from 60/44 to 72/55, both of which are very low measures, even for Patty. From that point forward, Patty has felt very weak and lacking in energy, and has been battling shortness of breath. She's sleeping now.
I feel so much for my wonderful friend right now. She is frustrated by the illness borne of her treatments, disheartened by these latest results, exasperated by the doctor's interpretation of same, and worried about these latest symptoms. She is saddened that a week with great weather and without the kids isn't allowing her any time to get out of the house with me. She doesn't like it when I talk too much about her emotional state -- out of fear others will see her as a "complainer" -- but I can tell all of this is taking a toll on her spirits. She is missing the counsel of her parents, worrying about the kids and me, wanting to feel useful, and yearning for the life she was loving so much. I just want her to catch a real break -- and it makes me so angry that I can't make it happen.
Love,
Brian
P.S. Sorry about the rant. On the plus side, it sure was nice to see Patty smiling through much of the morning.

Monday, March 26, 2007

And so on, and so on

Hi everyone:

Patty has felt terrible all day. Her head continues to ache incessantly, and the only real relief comes from taking a medicine that pretty much knocks her out for hours. The photo to the left was taken just moments after Patty arose from a three-hour nap (this after a two-hour nap in the morning.) As much as I miss her companionship, there's something to be said for avoiding pain, even if the only means to that end is to render yourself unconscious.

In the comments from one of yesterday's posts, our friend Dawn shared an article about adult stem cells as a treatment to stall and/or reverse heart disease (thanks, Dawn.) I shared this article with Patty's doctors, who have not yet reacted. I think we raised this idea once in the past and were told either that Patty's heart was too far gone, or that too much time had passed since her heart attack, for this to be a viable option. If I hear a different position, I will share it. The interesting wrinkle in this article that sets it apart from others I have read is that it suggests this procedure helped someone long after they had a heart attack. Interesting...

Patty's spirits seem to have taken a bit of a beating this time around. Clearly, she is tired and frustrated about feeling ill from the side effects of medicines that have yet to prove their merits. I looked back at the blog entries from her previous infusion, in the hopes I could suggest to her that tomorrow will be a better day. Unfortunately, Patty's last treatment coincided with her getting the flu, so it's really hard to predict how long it will take for her to feel better. Let's hope it's soon.

Love,
Brian

Sunday, March 25, 2007

Chemo food, part I

Grilled Hebrew National hot dog on a toasted garlic bun with mustard, red onions, pickles and plum tomatoes

Still ailing

Hi everyone:
During all of the hours in which Patty has been awake and alert today, she has been plagued by a headache. Thankfully, she has been able to sleep for much of the time.
While I was doing some research today into the use of rituximab (Rituxan) to reduce panel reactive antibodies (PRA), I found one study that suggested that 80% of highly sensitized patients (like Patty) had either a reduction in their PRA or a change in the specificity of their antibodies after receiving treatment with rituximab. One pediatric patient saw a reduction of PRA from 55% to 18%. I wonder what it is about Patty that renders her incapable of realizing the antibody reductions that others have achieved. Perhaps the next round of PRA results will demonstrate that I'm speaking too soon.
The same research report said that there are 5,000 persons in the U.S. with a PRA above 80% awaiting kidney transplants at any given time; of these, only 300 receive a transplant each year, and these require strict adherence to anti-rejection protocols, because they have a much greater tendency to experience rejection episodes of some severity soon after transplant. This is a worry of ours -- will Patty receive a transplant, only to be subjected to a barrage of other medicines that render her even less capable of living a "normal" life?
The patient has awakened, so I'm going to sign off to spend some time with her. Please keep her in your best thoughts for a quick rebound from these troublesome meds.
Love,
Brian

Saturday, March 24, 2007

No surprises here

Hi everyone:

As anticipated, Patty awakened this morning to pretty severe nausea, headache and fatigue, and has continued to fare poorly throughout the day; the term "generally well tolerated" must really mean, in most instances, "within the patient's ability to endure, albeit barely." Patty moved from the bed to the sofa, but has had little motivation to be much more active than that.

If history serves as our guide, we can anticipate that Patty will be feeling rough for the next several days. I continue to be in awe of her toughness and perseverance; under the same circumstances, I doubt I would hold up as admirably.

For the second time in as many days, Patty experienced an irregular heart rhythm; this one felt erratic enough that Patty found it unsettling. These two incidents were the first in more than two weeks; we had fooled ourselves into thinking the reintroduction of metoprolol into Patty's drug regimen had taken care of the problem. Still, it's fair to say the frequency of her arrhythmias has been reduced.

Trish and Kathleen visited last night, and Kathleen is continuing her visit today; feel free to offer sympathy for the latter (okay, okay, I'm kidding.)

Please keep your fingers crossed that Patty will bounce back more quickly this time around.

Love,
Brian

Friday, March 23, 2007

Rituxan/Cytoxan -- round three

Hi everyone:

Patty completed her third round of Rituxan/Cytoxan this afternoon; as usual, she slept for much of the time, and is home and doing pretty well right now. Before the infusion, Patty's blood was drawn, and we packed it up and mailed it before noon. With luck, we'll get the PRA results earlier this time (late next week, perhaps); with some real luck, perhaps the numbers will be much more encouraging. I still find it astounding that a PRA of 20% is considered high, when Patty's is at 100%.

Can one or more of the statisticians in the family figure out what the odds are against a successful match if on one front Patty is incompatible with 60 of 100 prospects, and on another she's a no-go with 100 of 100, and both fronts are near-absolute factors against a transplant? For example, I know that if the second number was 90 out of 100, the incompatible group would be greater than 90 percent, because of the other PRA factor of 60/100. I guess I'm just trying to grasp what might ultimately seem like a hopeful set of numbers. I know that 0%/0% would be a nice goal.

As you can see from the photo, Patty started the day feeling energetic and in good spirits. She seems to be in a similar state now, after a day of deep napping. I don't want to sound too pessimistic, but I suspect Patty will be in a different condition over the next couple of days, once the meds start to kick in. Have a great weekend, everyone.

Love,
Brian

Thursday, March 22, 2007

A nice day

Hi everyone:

On the day before the next round of Rituxan/Cytoxan, our patient is doing well; let's see if I'm reporting similar things after her next infusion. We hope to break away from my work for a half hour or so this afternoon to enjoy a walk on this beautiful day. Some of Patty's students are coming to the house after school to have Patty look at their portfolios, and just to have some "Mrs. O'C" time.

We were disappointed yesterday that we were never able to reach Devin to wish him a Happy Birthday. Now we have just a few weeks before Kelly's birthday comes around. After tomorrow, the kids will be on Spring Break, and Patty and I will have some kid-free time.

That's all that is happening around here; I'll be back with more when something else happens.

Love,
Brian

Wednesday, March 21, 2007

Tuesday, March 20, 2007

Not much going on

Hi everyone:

Patty is having yet another decent day, which may be a bit surprising given that she slept on the sofa all through the night to "keep me company" while I plugged away on a rush project; to be honest, I did keep at it longer because she was in the same room.

We're almost three weeks out from her last Rituxan/Cytoxan infusion, and just days away from her next; I haven't checked the archived messages, but I suspect we would find that Patty fared better the further removed she was from each round of infusions.

We're going out for dinner tonight to celebrate Connor's birthday (yesterday). That's pretty much the whole story about our circumstances; I'll write again if there's anything new to share.

Love,
Brian

Monday, March 19, 2007

March 19


Two ships passing in the night...

Hi everyone:

The past couple of days have been somewhat chaotic in our home, even in the absence of children. We had visitors both Friday and Saturday nights, and briefly on Sunday; this gives me some companionship during the times when Patty just doesn't have the energy to stay awake and active.
Other than a walk yesterday afternoon (during which we ventured over the the kids' "clubhouse", pictured, which we now think of as perhaps the most dangerous place on earth), Patty and I have had far fewer opportunities than normal to just enjoy each other's company.
I have been keeping crazy hours working on a couple of demanding client/prospect efforts, while Patty has been juggling bridal shower plans, medical appointment schedules and numerous other picky details. I wrapped up my work last night at 5am, just 30 minutes before Patty got up to take Kelly to school for an early field trip departure. I awakened later this morning, just in time to see Patty off to bed for a long nap. And the cycle continues...

Here's the good news -- through the past several days, Patty has felt pretty decent for much of the time. She is still very tired for at least part of most days, and she still has to tackle nausea most mornings before she starts her day, but the past week has been pretty pleasant for her, overall.
Of course, this will all likely change after she goes for round three (or is it four?) of Rituxan/Cytoxan on Friday. On the same day, Patty's blood will again be drawn for the PRA test, the results of which we should have in about a week. If the numbers aren't encouraging, we plan to have a serious conversation with her doctors about what should and should not be part of her future care. I think Patty is reaching the point where she feels she wants to try to do anything reasonable to preserve a healthy future, but is also starting to redefine what she considers "reasonable." Let's just keep our fingers crossed for better numbers this time.
Love,
Brian

Saturday, March 17, 2007

Late nights, lasagna, labors and lethargy

Hi everyone:

Patty is tired today, and started the morning feeling pretty nauseous, but she is coming around as the day progresses. We had visits last night from Cindy, Trish and two Jims. Patty headed off to bed at 1:30 am, and I sat up chatting with Cindy until 4 am. Today, I prepared three pans of lasagna -- two for the freezer, and one for dinner tonight. Now, as Patty watches TV, I'm working on a client project. A late afternoon nap will likely be part of our day's schedule. I'll get back to you if anything more interesting transpires.

Love,
Brian

Friday, March 16, 2007

So far, so good

Hi everyone:

Patty started out the morning feeling nauseous, but seems to be gradually coming around thanks to her potpourri of morning pills (she also has mid-day pills and evening pills.) This may turn out to be a decent day for her, after all.

My original plan for this morning was to meet with a client in Lake Forest, but that was postponed at the last minute. As I eased my frenetic pace and switched from dress pants/sweater to pajama bottoms/T-shirt, Patty said that she was still feeling tired and would likely go back to sleep. I felt she would rest more comfortably with fewer lights on, and as I turned them off I shared with her my thinking -- unfortunately, what came out was that I wanted her to more easily "rest in peace." Oops.

I'll catch you up on Patty when she's up and moving around.

Love,
Brian

P.S. Amid the sea of blackbirds and chickadees around our bird feeders, I have noticed robins and cardinals over the past couple of days, which usually convinces me that consistently warmer weather should be on its way -- and that we're only a few weeks away from a time when we can realistically hope Sox pitchers will collectively have an ERA of less than 10.00. Fortunately, these games mean nothing...except, of course, the games against the Cubs. Go Sox.

Thursday, March 15, 2007

Doing okay

Hi everyone:

Patty says she feels "just fine" today. Although she has an occasional cough and sporadically experiences the same minor symptoms she always has, she is enjoying a second consecutive day of decent physical health. It's a good thing that superstitious thoughts seldom translate into realities, or I may well have condemned Patty to a miserable day tomorrow. Perhaps this time we'll defy the pattern and she'll just keep feeling stronger with each successive day. Patty is enjoying the novel The Life You Longed For, a library book about a child with heart disease; it must be a good one, because it's hard to draw her away from the pages.

I did notice at one point today that Patty seemed distracted, and perhaps even a trifle distressed. When I asked her what was up, she said that she had been thinking about the latest PRA numbers, about the lack of success with techniques that have worked for many others, and about me and the kids, and she felt just a moment of hopelessness. I didn't know what to say, other than to share my belief that her toughness may take her farther than doctors could ever appreciate. Thankfully, Patty rarely dwells on anxieties; instead, she quickly adopts a pragmatic view and starts to plan next steps. I really admire this.

I'm racing to get material ready for a meeting tomorrow, so I'll sign off for now; if anything new arises, I'll be back in touch.

Love,
Brian

Wednesday, March 14, 2007

A big improvement (knock on wood)

Hi everyone:
The Patty of yesterday was but a mere quivering, miserable shadow of the much more vibrant and cheerful Patty of today. We were dragged out of bed at 6:45 am by PJ, who had missed his bus and needed a lift to school. Since we were awake, and as Patty was feeling much better than yesterday (after some very early nausea), we were able to get an early jump on our day. Patty did some adjustments to an e-vite, and we both did some laundry; now, I'm getting ready for a conference call and Patty is getting ready to relax for a while.
I'm admonishing Patty to pace herself in whatever activities she undertakes, because I don't want her to overdo it and end up in bed all day tomorrow. Although she is feeling generally well, she did have a very low fever when we took her temp this morning, so I don't want her to court trouble.
Today is my brother Dave's birthday -- have a good one, bro.
Love,
Brian
P.S. Patty felt it was important that I mention that she had done laundry this morning; she was afraid blog readers would think all she ever does is rest on the sofa. She speaks the truth -- I've seen the evidence.

Tuesday, March 13, 2007

One more addendum...

Hi everyone:

As I was reading Patty the previous blog entry, I felt some concern that blog readers might feel I'm not being sufficiently positive in my messages, for Patty's sake. At the start of all of this, and months before the blog was conceived, we agreed we would do our very best to understand all aspects of Patty's condition, both good and bad, and that we would share what we learned without any candy-coating. Patty feels that information is vital to her ability to cope with this situation, and I feel the same way. So please don't worry, if you are, that I'm taking the wind out of Patty's sails; we're both feeling that knowledge is one important part of any possible solution.

Love,
Brian

P.S. It's 3:45pm, and only moments ago was Patty first able to emerge from our bedroom, to make the short trek to the sofa; she's really having a pretty miserable day.

The Emory Algorithm

Hi everyone:

Each time we receive updated PRA numbers, I feel compelled to learn more about the whole issue of pretransplant sensitization. Often, this involves re-visiting material I've already read, but sometimes it yields new nuggets of information...and sometimes it just leads to greater confusion. I think this curiosity is a bit frustrating for Patty's doctors, because we are sometimes challenging them based on data that may be dated and therefore inaccurate, or that is contradicted by other studies. I'm not afraid to admit that I'm sure, at times, that I'm getting the information almost entirely wrong. For anyone who is curious about the nitty-gritty, below is what I've been encountering most recently.

This morning, I read a study from 1996 that showed that people with PRA levels similar to Patty's typically do not survive as long as those with low PRA levels, even if a suitable crossmatch is found. In this particular study, the three-year survival of patients with a PRA over 11% (Patty is at 100%) was 39-56%, depending on the type of sensitivity, as opposed to 76-78% for those with low PRA levels. Ultimately, do these numbers mean anything, because they were reported in 1996? We don't know, but they sure provide food for thought. Other study results suggest that the PRA numbers are too highly regarded as a factor in considering a person eligible for transplant, and that they don't ultimately factor into measures of rejection and/or survival if the crossmatch is, as desired, negative. In still another study, the results suggested that even a transplant against positive crossmatch could be performed without significant long-term consequences. Do you see the conundrum here?

I read with great interest some recent stories about a new decision process called the Emory Algorithm. In brief, this algorithm is used to help refine the process of determining whether or not a person will tolerate a transplanted organ (most often, in this case, a kidney), by identifying specific antigens that would cause a negative response to a transplanted organ. My hope was that we might find that within Patty's numbers, even though they are high, there might be some pathways to a successful transplant. With mild optimism, I contacted Patty's cardiac team; one member replied:

The Emory Algorithm, from my read, is a listing strategy where they find "unacceptable antigens" and then let the organ bank know. We do this also for highly sensitized patients; unfortunately, Patty has such numerous antibodies to preclude listing them as unacceptable.

Of course, Patty wouldn't be Patty if she didn't stand out, even among a group of people who themselves stand out because of their high PRA levels. If I understand correctly, the whole PRA mess goes beyond just the 60/100 number, to include both sensitivity (the PRA percentage) and specificity (the specific markers within those percentages that rule out, or rule in, a possible candidate). Unless I'm mistaken, Patty is pretty much off the charts in both regards.

My reading, and my hope for some magical answer, continues...

Love,
Brian

The flu...anew

Hi everyone:

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

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

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

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

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

Love,
Brian

Monday, March 12, 2007

A better moment

Hi everyone:

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

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

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

Love,
Brian

This sucks...but it sure looks nice!



Hi everyone:
For those of you who read the blog regularly, you'll know that the number above is far, far, far from ideal; I just wanted to try out a new Illustrator technique, so it's really just a sow's ear.
I suspect it would take a pretty optimistic doctor, even, to say that the reduction from 70/100 to 60/100 is one to greet with much enthusiasm. To flog a dead horse, if either number stays high -- for example, 100% -- it's extremely unlikely for a transplant candidate to receive a donor organ. For those of you who have read my constant descriptions of PRA, I'll spare the lengthy version today; suffice it to say that these aren't good numbers.
If you prefer to regard these numbers from an optimistic viewpoint, you could perhaps derive some comfort from the idea that in one month, one of the numbers dropped, and that subsequent treatments might make a further difference. By the end of the month, we should have another number, this time reflecting the second month of treatment. However, even if the 60% figure drops to, say, 10%, we will really be no further ahead if the second number stays high.
Sorry to sound like such a downer, here -- there are huge chinks in my armor from seeing Patty sick so often, particularly when it seems like the suffering was, in retrospect, all for naught. In fact, Patty has again started talking about when to say, "Enough is enough," at least as regards trying new things; I think she's hopeful she can beat the odds with the heart she has, at least for a while. I just want her to be well and happy, regardless of the means to that end.
Love,
Brian

Sunday, March 11, 2007

Patty and the flu

Hi everyone:

Fever, headache, profound fatigue, chest congestion, cough -- these have been Patty's more-or-less constant companions over the past couple of days. It appears the flu did not overlook our patient, and all that remains to be seen is the severity of the symptoms to come. To be frank, I'm nervous; we just don't know what to expect. I've witnessed what PJ and Connor have gone through, and I'm afraid Patty will fare worse, because of her immunosuppressed state.
PJ still has a persistent cough more than a week after his onset of symptoms. Connor missed school Thursday and Friday, and only today is starting to seem himself. To date, Kelly and I have dodged the bullet. Please keep your fingers crossed that Patty will get through this with minimal discomfort.

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

Kathleen dropped in last night for a visit. Patty wasn't really up for company, so Kathleen and I ventured over to Kicker's for a drink. Shortly after our return, I cooked up a ridiculously unhealthy late meal (featuring bacon, butter and cheese), and that pretty much wrapped up our night.
Today, we've done little. We watched An Inconvenient Truth, which is a very unsettling film, and have been relaxing in front of the Supernanny marathon this afternoon. I really haven't figured out yet why, when our youngest child is 10, we feel compelled to watch hour after hour of toddlers behaving badly, and yet here we are...

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

Love,
Brian
Patty reads email and the blog


Kiddo


Patty & Brian

Friday, March 09, 2007

10,000 and counting

Hi everyone:

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

Love,
Brian

Sick, sick, sick

Hi everyone:

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

Love,
Brian

Wednesday, March 07, 2007

More walking wounded

Hi everyone:

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

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

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

Love,
Brian

Tuesday, March 06, 2007

Sick again...but on the mend?

Hi everyone:

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

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

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

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

Love,
Brian

Monday, March 05, 2007

Another rough one

Hi everyone:

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

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

Love,
Brian

A "Heart for Patty" dinner

Hi everyone:

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









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


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

Love,
Patty & Brian

Sunday, March 04, 2007

A very unpleasant day

Hi everyone:

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

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

Love,
Brian

Saturday, March 03, 2007

White Sox 6, Diamondbacks 5

Hi everyone:

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

Patty is still feeling dicey.

Love,
Brian

A nice night, a less pleasant day

Hi everyone:
Patty is feeling rough this morning, as we anticipated; her stomach is aching, and she's nauseous. If she follows the same pattern as for her last transfusion, she'll feel miserable for a couple of days, and will then slowly start to come around. She has already expressed her intent to stay pasted to the sofa for the entire day.
Our friends Cindy and Jim visited last night, and came bearing two bottles of Wiser's Deluxe, my favorite hard-to-find Canadian whiskey; for this, they immediately and irrevokably earn the "hero" designation. We watched the Leafs game; because the Leafs unexpectedly won this game (4-3 in a shootout) against a tough team, I've now become superstitious and have asked Cindy and Jim to watch tonight's game with us. Cindy stayed over, and is relaxing with us today; Jim plans to join us later.
Below are two more photos from last night:















Friday, March 02, 2007

Today...

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



She didn't even seem too irritated when we had to wait 90 minutes to get started...
She had some brief stomach discomfort, presumably as a response to one of the drugs

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


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

Love,
Brian

Off to the hospital

Hi everyone:

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

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

Love,
Brian

Thursday, March 01, 2007

Good day today, chemo tomorrow

Hi everyone:

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

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

Love,
Brian

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