Tuesday, October 31, 2006

From Brian's parents

Hi everyone:

My parents are not savvy with all things Web, although they are still better than many others of their generation (and ours). They wanted to post a comment in response to Patty's entry of a couple of days ago, but weren't sure how. With my parents' permission, I'm sharing a message they emailed to us this morning:

Hi Folks:

Thought that I'd drop a couple of lines this way as I don't understand bloggers and how to answer them or send comments. As I said before you are a very brave family and no one can appreciate all that you are going through. The 'world' tries to understand but, as I pointed out to Brian, your problems are very personal and the rest of us can only express concern and sympathy--and criticism!

At the end of each day the world shrinks to the walls about you and I think that your little community is tops in holding together when all about you there seems to be chaos. We are most proud of you all and think that you should present yourselves anyway you see fit. Brian has grown a lot over the past year and he appreciates the need to remain strong to everybody--especially Patty and the kids--and no one can take away that personal pride he should have in the face of adversity.

You are a family with problems that seem astronomical and insurmountable (at times)--but keep the faith and do things your way--and to hell with criticism that might burden you further. You'll get there! All of us have faced adversity--while yours is more trying than most--but remember you have people who love you all and who continue to hope and pray to God for a just answer to all our prayers.

People only see the visible side of things and question why you are doing some things that appear incongruent with their ideas of what is right and wrong. Just remember that what you are doing is 'right' for you.

All our love, prayers and thoughts,

Mom and Dad.

Monday, October 30, 2006

The Zzzzequel

Hi everyone:

Although Patty eluded vomiting for yet another morning, again by the narrowest of margins, she has felt a general malaise throughout the day. She strikes me as especially pale; in fact, I adjusted the brightness of this photo so that the flash effect on her skin didn't seem so dramatic.

These days, even when the nausea has passed, Patty complains of weakness and/or fatigue, and she sometimes cannot shake her headache even with medication. Yesterday, when we went for a walk, I could tell that Patty's breathing was more labored. The photo for today's entry was taken just moments ago; Patty can easily fall asleep for hours and in no way respond to the sounds around her. She does have this unsettling habit of twitching suddenly in her sleep, which usually makes me jump if I'm in the immediate vicinity.

Although there are no major changes that are obvious from day to day, we both keep feeling that Patty is growing weaker overall. As silly as this sounds, she's down for the count so often that I often find myself missing her, even if much of the time she's in the same room.

As mentioned, Patty can doze for huge stretches. Unfortunately, I seem to be struggling to sleep these days. Last night, for example, I slept a total of less than four hours, and awakened shaking from three discrete nightmares. On the nights without horrific dreams, I usually awaken three or four times to make sure Patty is okay. I'm not the only one experiencing such frustration -- Connor knocks on our door in the middle of the night at least one night each week. I wonder if there's a point at which this incessant sense of near-panic will fade.

Last night, I was doing some research on the advancement of lupus symptoms and the correlation between lupus and heart failure. As I was surfing through various medical pages, I shared with Patty that I had in the past compared symptoms I was feeling with descriptions of various conditions, and had even self-diagnosed myself with ulcers, obstructive pulmonary disorder, and such. Of course, when I would look closely at the symptoms, or talk with a doctor, I would learn that I was being little more than a hypochondriac (and was usually being foolish.) I then said that it sometimes struck me as surreal just how often these lists of symptoms, for lupus and heart failure, seemed like a checklist of what Patty had been experiencing. In fact, Patty often had both the typical symptoms of a condition and some of the less frequent or even rare aspects. She was so dead on, in some cases, that the discovery of the information was chilling.

That's it for now.

Love,
Brian

Sunday, October 29, 2006

A nice gesture

Hi everyone:

I just wanted to mention that a parishoner from the Trinity United Methodist Church in Yorkville stopped by our home over the weekend with two bags of gifts -- including snacks and a handmade afghan. This was a nice surprise for Patty, and much appreciated. More tomorrow...

Love,
Brian

It's Patty

Hi:

It’s Patty, taking over the blog for just a few moments. As many times as Brian has extolled my virtues (and displayed my weaknesses) on this blog, I figured turnabout was fair play. Besides, whose blog is it, anyway?

As these past months have passed, Brian has told you from time to time about his efforts in gathering activities to entertain and distract me and the kids. You’ve heard of excursions to waterparks, to concerts and such. I know that whenever Brian sets these things up, he feels two emotions – excitement about being able to plan something for loved ones, and worry about being misunderstood. Can you imagine that he has worried that people might think he is trying to capitalize on my illness in a callous way? I tell him that he needs to set aside such worries, because the kids, myself, those that really know and love us, and the powers that be, all know what is truly inside his heart, and it is nothing but goodness.

When Brian writes a blog entry, he writes about the recipient, but he doesn’t really talk about how hard he works to make these events special. Let me illustrate, by sharing what I know about the events before, during and after the concert Friday night.

Brian contacted Flogging Molly (FM) over the summer on PJ’s behalf because the kid had professed to Brian that FM was his absolute favorite. So Brian wrote to them and obtained a signed CD, a copy of their new DVD (before its release date), and best wishes for our future. For months, Brian religiously checked FM’s website each week to see when and where the band was performing. When he discovered that FM was soon going to perform here, he wrote again and asked if PJ could see them and perhaps even meet them.

Once it was confirmed that the band was amenable to that, Brian set about planning this night for Patrick in order to make it the most magical it could possibly be. He asked for enough tickets so that PJ’s girlfriend Kelsey could go along – and was granted all-access passes so that they could all go anywhere, at any time. He made sure that all transportation plans were worked out to the finest detail so as to adhere to the band’s recommendations for the best time to meet the guys. He made sure his camera was fully charged and ready for action. They hung out with all the bands before the performance, Brian snapping away, for more than and hour and a half, and then were allowed to stand onstage for a portion of the performance. They ultimately were given balcony seats, directly above the stage. PJ has not only memories of the night, but also signed T-shirts and many photos of he and the guys hugging and back slapping.

When we got home that night, as exhausted as Brian was, he sat and went through all the pics he had snapped, chose about 35 of the very best, and put them into a file to take in to Walgreens to have prints made, so PJ would have a brag book for the next day. He then woke up early, drove the file to the store in a car that is like being in a wind tunnel because of the taped-up window, and had prints made, and placed them in two photo albums—one for Patrick, and the other for Kelsey.

Can you imagine what a dream come true a night like this was for Patrick? It was, let me assure you. For Brian? A not-so-fun chaotic evening he toughed out, and remembers fondly, because he was doing something nice for his kid. Brian has a gift for finding things to make the people he loves so happy, and he continues to demonstrate that daily. Doesn’t that make me the luckiest woman alive?

Love,
Patty

Zzzzz....

Hi everyone:

After a string of days that started with vomiting, Patty has now enjoyed a streak of three days without throwing up. In fact, Patty actually felt pretty well (at least in relative terms) when she arose this morning. Of course, she didn't feel well enough to prepare her own cup of coffee...but I digress.

On most mornings, Patty tries to move as little as possible for the first couple of hours; by comparison, she was quite animated today. Please understand that, at best, Patty's energy levels are still usually less than the average person's; however, we've learned to recognize even a bit of energy as reason to celebrate.

Late this morning, we went for a walk with Connor and his friend Alec, after which Patty settled in for a long nap that has extended for more than two hours; she continues to snooze as I write this. If the worst of her symptoms for a day is a bit of fatigue, I think we would happily sign up for that plan. Unfortunately, Patty seems to be struggling as much lately with the emotional side of this reality. Late last night, we had a lengthy conversation in which Patty expressed many anxieties about her--and our--future. I asked her to worry about herself and not to fret so much about me and the kids, but I'm not sure she's embracing that thinking.

PJ is going to a play in Lincolnshire this evening with his girlfriend Kelsey and her mom; this is, of course, the only thing he has done today that didn't involve a computer, a television or a phone. Kelly will be returning from a weekend that saw her visit both Peter's and MaryBeth's homes. Connor had a sleepover last night and has been splitting his afternoon between play with friends and watching the football game. Speaking of football, how about those Bears today? The first half was of course much more exciting than the second, but the final outcome was certainly pretty satisfying. I spoke with Devin and Colin this morning; they went to the symphony in Toronto yesterday. I miss them so much, and hope we'll be able to bring them down soon; at the worst, I hope we will see them at Christmas.

Peter, Rachel, Ben & Sam will be here shortly to return our daughter and perhaps join us for a bite of dinner. After that, I suspect that Patty and I will settle into a quiet evening before what promises to be a somewhat hectic week.

Love,
Brian

Saturday, October 28, 2006

...and bad times

Hi everyone:

At the end of my previous post, I talked about how the evening with my son demonstrated to me how kind-hearted people can be. Unfortunately, some events last night also showed us that there are people out there whose hearts aren't as full of kindness toward others.

While I was at the concert, Patty visited with her brother Peter and his family. At one point, Patty recalled that I had forgotten to take our Ipod out of our car. When she went down to retrieve it, she discovered that our front passenger window had been smashed, and our Ipod stolen.

My understanding is that Patty was pretty much a wreck; by extension, Connor also became pretty upset at seeing his mother so distressed. Peter and Rachel worked at cheering her up, and then Peter sealed up the window. On Monday, the window will be replaced; until then, we won't have a lot of transportation options, and we'll hope for no rain. C'est la vie.

Why, do you suppose, a family can go forever without any Twilight Zone moments, and then have several in short order when least emotionally prepared for them? A few weeks ago, you may recall, our trampoline became a giant frisbee. This is the latest. Since, as the story goes, these things come in threes, I hate to even imagine what could come next.

Love,
Brian

P.S. Every time I think about the window and the Ipod, I feel some level of distress; every time I see Peter's tape job, though, I crack up.

Good times...

Hi everyone:

Last night, I joined PJ and his girlfriend Kelsey at the Flogging Molly concert at the Riviera Theatre in Chicago. We had all-access passes, which allowed us to pretty much go anywhere before, during and after the show. I think the kids had a great time, and I had a great time seeing them have fun. I'll let a few pictures tell the story:

Flogging Molly in concert



PJ with Dave King, lead singer of Flogging Molly



Nathen Maxwell of Flogging Molly, PJ & Kelsey



George Schwindt of Flogging Molly, PJ, Kelsey & Loomis Fall from Jackass



Everyone -- and I mean everyone -- was very gracious and accommodating. So many times during the evening I was reminded about how wonderful people can be.

Love,
Brian

Friday, October 27, 2006

A very busy Friday

Hi everyone:

Patty started the morning feeling nauseous, but was able to avoid throwing up. The close calls are so close, though, that I can usually sense a near-miss. Basically, when a quiet belch sounds like a deep gurgle, you know things are tenuous. Okay, enough with the graphic bodily function commentary. We're fortunate that Patty isn't ailing as much today, because we've made some pretty ambitious plans.

Early this afternoon, Patty and I are going to speak to Connor's class about Patty's experience. This is essentially a repeat of our presentation to Kelly's class, but with a younger audience. As much as Connor wants us to do this, he is apprehensive that other kids in his class will ask him questions he'll feel uncomfortable answering. Our hope is that most of these questions will come out during the session -- if Kelly's class represents the norm, though, we'll be looking for the exception here, because we didn't field a single question last time.

Later this afternoon, our family (less Devin and Colin) plus Kelsey are heading downtown for the evening. Patty, Kelly and Connor plan to visit with Peter, Rachel and their kids, while I will join PJ and Kelsey at the Flogging Molly concert at the Riviera Theatre. I was able to arrange for PJ and Kelsey to meet the band, so I'm hoping that all works out according to plan. I'm presuming PJ is excited, although teenagers seem to make it their mission to always seem milquetoast about everything around their parents--unless, of course, a parent says "no", in which case the child becomes effusive in sharing his/her thoughts. Does this sound familiar to everyone? Oh, the joys of parenthood.

After the show, we'll be heading back here for the night, and will anticipate a slower-paced Saturday.

Time to run...

Love,
Brian

Thursday, October 26, 2006

A later start today

Hi everyone:

Sorry I'm so late in posting a blog entry today. I was running some errands for part of the afternoon--groceries and the previously mentioned coffee-maker--so this is my first chance to devote time and thought to this.

Patty has had a pretty miserable day. She vomited early in the day, and has been fighting the urge for more of the same ever since. Typically, Patty improves as the day progresses; today was an especially unpleasant exception. As frustrating as her physical travails are, I am worrying more and more about Patty's ability to emotionally and mentally tolerate day after day without real relief. Last night, and for the first time, Patty admitted that she is becoming worried about dying. I had to admit that I had jumped into the lead on her behalf long ago. This is not to say we're convinced there's no reason to hope; it's just that we think there's a legitimate reason to worry.

We spoke to a doctor on the transplant team late this afternoon. The message we have heard now from two doctors is that they agree it's too early to presume none of these medical interventions will be effective. In each case, we heard, "You're only 45 years old; you're much too young to give up." We agree--although Patty has said, time and again, that she doesn't want to keep trying things that make her more and more sick, if the prognosis continues to fall between pessimistic and bleak. Again, we hope that these notes I'm writing will one day form the basis for a "boy, did I overreact" scenario.

We also heard that lupus will be explored in greater depth in the near future; Patty will soon see a specialist who is familiar with cases similar to Patty's. Later this week, Patty will have her PRA tested again; after this, doctors will have further conversations with us about future options. In addition, Patty will undergo plasmapheresis and IVIG infusion.

On the positive side of things, our family is experimenting with a weekly "family night" -- where we make dinner together, talk about some of our issues/challenges during dinner, and then play a game or watch a movie. We're feeling like we need to connect in a more deliberate, planned fashion. Family night #1 is starting, so I need to sign off.

Love,
Brian

Wednesday, October 25, 2006

The quest for coffee

Hi everyone:

Here's the latest in a long line of photographs that are flattering to my wife -- heh, heh, heh. Patty expressed some agitation that I was taking pictures of her, so I had few images to choose from this morning. Hence, this little gem you're enjoying right now.

Patty started her morning with some vomiting, and is generally feeling rough today. Her sister MaryBeth is visiting, which seems to be boosting Patty's energy. MB has been unbelievably helpful to Patty through the past few months. She has helped Patty and I with everything from health insurance to hostas, and pretty much anything in between. On top of this, Patty usually calls MaryBeth with our toughest kid issues.

There's not much else going on today. I'm working on some website banners for a client, and need to run an errand to replace a coffeemaker; add this to the long list of things that seem to be falling apart. I'm not kidding when I say it seems like we're jinxed at times. Since coffee seems to be one of the few joys Patty can enjoy each day, this errand is a bit of a priority.

Love,
Brian

Tuesday, October 24, 2006

Fashionista extraordinaire

Hi everyone:

I tried to attach this image to the last posting, but Blogger is a bit shaky on this front. Anyway, here it is. Is it just me, or does Patty look great even in a hospital gown and a medical setting?



Love,
Brian

PICC...and choose?

Hi everyone:

Today, Patty went to Central DuPage Hospital to have her PICC line replaced. This is the IV line through which Patty receives the essential drug milrinone. Under normal circumstances, this is a simple 15- to 30-minute procedure. Of course, Patty is about everything but normal, so the process took more than an hour, which of course made me fret and pace. When Patty arrived back in the room, looking perky and healthy, I remember feeling surprised -- even though the procedure was no great event, at least in the scheme of things.

It turns out that the PICC replacement was hindered by the fact the vein in which the line was situated had stenosed greatly (that is, scar tissue had formed around the old line.) Based on the research I could find online, this occurs in only seven percent of people in whom PICC lines are implanted. Am I the only one who thinks Patty would have had this problem even if it was against 1-in-1,000 odds? Ultimately, though, she came through the process with no major problems, although her arm is pretty sore.

We had a conversation with one member of the heart transplant team today about Patty's future, and this time around it sounded much like a friend position being presented than an official stance. We are hoping to hear more soon from one or more of Patty's cardiologists. We think doctors are starting to more seriously consider the impact lupus may be having on Patty's condition. Part of the next phase of the necessarily ever-shifting plan is to involve the rheumatology team in a more meaningful way in understanding what role lupus might be playing in making everything all the more a nightmare.

Doctors are also considering more extreme interventions to attempt to reduce Patty's antibodies -- including total body irradiation and administration of a more potent chemotherapy drug (retuximab.) Of course, as much as I keep wanting to find any new reasons for optimism, all of these things make me worry even more about Patty's day-to-day ability to cope. I keep shaking my head that every situation seems to be more complicated than the norm, and keep hoping I'll never fail Patty when she needs me to be strong.

The person with whom we spoke today recognized our worries about Patty's quality of life, and said she understood why we might be wanting to challenge doctors about how far we can go with these interventions. As we shared with her, we don't want to be fatalistic, but we also don't want to be, in the words of one of Patty's doctors, "stupidly optimistic." In case you hadn't noticed, I'm in one of those glass half empty moods tonight, although I had a chat with Neil as I was working on this and that put me back on the road toward laughing-at-adversity mode on Patty's behalf.

Tomorrow, we'll strive for a more sunny disposition.

Love,
Brian

Monday, October 23, 2006

An oh-so-minor update

Hi everyone:

I promised I would write if there was any news. I'm not sure this really counts, but we confirmed this afternoon that Patty does need to have her PICC line (for administration of milrinone) replaced. Most likely, this will happen tomorrow sometime. Other than that, we're pretty much in status quo right now. Patty is experiencing sporadic headaches this evening, but seems to have pretty much conquered her nausea for the day; I'm sure this "old friend" will come back tomorrow morning...watch for it.

I feel like I'm wasting everyone's time with postings that demonstrate no progress. Believe us, we've reached the point at which it would be nice to offer something exciting -- like a transplant, perhaps?

Love,
Brian

A none-too-pleasant Monday

Hi everyone:

After a hiatus of nearly a week, Patty's vomiting returned this morning -- and with a vengeance. Hopefully, such experiences will be the exception over the next little while, and not the rule. However, after a pretty rough morning, Patty seems to be having some success in stomaching an english muffin and a Ho-Ho. Keep your fingers crossed...

Patty has a routine appointment with Dr. Costanzo this afternoon, before the doctor heads out of town for several weeks. Although we're not anticipating that much of consequence will transpire during this visit, Patty still feels uneasy; there's always something going on with her, healthwise, and one never knows when a doctor visit could become a hospital stay.

For example, Patty recently caught her PICC line on the inside of her shirt; since then, her milrinone pump seems to be beeping more often, which suggests a possible problem with the IV flow. Naturally, this situation tends to present itself at 2am, when one least wants to deal with such an issue. If the PICC line isn't functioning properly, Patty will most likely need to have it fixed, which would involve a hospital visit.

We continue to feel impatient that we've received no more answers right now, and that we're stuck in a waiting game. A sensible person would perhaps think that no news is good news, and that we may not have received answers because there are no answers as yet. At times, though, there's also this feeling that things are too much outside our control, and that the clock is always ticking.

That's all we have for now; if anything arises from the appointment, I'll be sure to write again.

Love,
Brian

Sunday, October 22, 2006

A short one

Hi everyone:

Sorry this posting is coming so late in the day. Today, we attended the memorial service for Sharon's father Bob; the gathering was deeply moved by the stories of his life. We returned home with Kathleen and Valerie for a pasta dinner and a family movie. Patty had a few dicey moments, nausea-wise, through the day, but was otherwise fairly energetic. Now, I'm heading back to our Tivo-ed edition of Real Time with Bill Maher, part of our required weekly viewing. I'll get back with you tomorrow.

Love,
Brian

Saturday, October 21, 2006

Patty on tour

Hi everyone:

Last night, Patty and I spent the evening in downtown Naperville with our neighbors Jim and Trish, who treated us to a night at the Harrison House Bed & Breakfast. The accommodations there are wonderful, as is the hospitality -- we would heartily recommend it to friends.

Nausea greeted Patty this morning as soon as she opened her eyes, and has been a steady companion throughout the day. Today, we're mostly just loafing around the house and watching television. I'm putting the finishing touches on an enormous pot of homemade bolognese sauce; I'm keeping my fingers crossed that it will turn out as intended.

There's little else to report right now, but I'll be sure to catch you up if anything transpires. Have a great day.

Love,
Brian

Friday, October 20, 2006

Taking it to the streets

Hi everyone:

Patty and I visited Kelly's health class this morning to lead a discussion about heart failure. We presented slides with images of the various elements of Patty's cardiac history, and then Kelly flushed Patty's catheter in front of the group. We'll be doing the same presentation next Friday for Connor's class. Somehow, Patty managed to talk for about 30 minutes while battling nausea; as I write this, she's sprawled on the sofa, recovering. And, I have to add, she's pretty crabby, because the phone is ringing every couple of minutes.

Last night, Patty and I were chatting by the fireplace while trying to watch the remake of The Omen (so far, I'm not too impressed). As we were chatting, I mentioned that one of my biggest worries was that Patty's health would deteriorate to the point where she would not be able to spend evenings socializing with me. I pointed out that it seems like our relationship is one endless conversation in which we each take turns picking up the thread from the other person, expanding upon it, and passing it back. I cannot imagine what it would be like to not have this second voice as part of my daily life.

I'm heading out now to run a couple of errands before our evening out with Jim and Trish. Before I go, though, I should mention that we had more than three times the traffic to this blog yesterday than on most other days; we presume it's because of the article in the Beacon. For those of you who haven't been here before, welcome, and please stop by from time to time and be sure to share a comment or two.

Love,
Brian

Thursday, October 19, 2006

I believe I ordered the large cup...HELLO!!!

Hi everyone:

Our patient is having a pretty rough morning, with a powerful headache and equally powerful nausea; the only blessing thus far is that Patty has been able to keep her stomach down.

Here you can see her enjoying the small cup of coffee I prepare for her each morning.

Kathleen and our neighbor Jim visited last night; all in all, though, we had a pretty low-key evening.

Today, I plan to finish a client project, and then prepare with Patty for a discussion we will be leading with Kelly's class tomorrow. This evening, we'll be making our second visit to a family therapist. Tomorrow, we plan to stay at a bed and breakfast in Naperville -- a treat from our neighbors Jim and Trish.

Sorry for the boring blog entry today; it can't all be like an episode of ER.

Take good care.

Love,
Brian

Wednesday, October 18, 2006

A local celeb?

Hi everyone:

This morning, we picked up a copy (okay, five copies) of the Kendall County Beacon News, a local newspaper; anyone stopping into our neighborhood Shell station will find themselves having to settle for another paper today. We knew an article was going to appear, but we were totally amazed to see that the article filled two pages, including the front page of the Lifestyles section.

Angela (the writer) and Marianne (the photographer) did a good job capturing the activities and emotions of our home these past few months. I have to admit that reading the article was a bit unsettling for me, because it reminded me that all of this is very real, regardless of how light we try to make things at times.

For those who want to see the article online, you can find it here.

How's this for news? Patty is feeling pretty well today. Knock on wood--no nausea (yet).

Love,
Brian

Another loss

Hi everyone:

We'd like to express our regrets to Devin and Colin and their extended family in Canada on the loss of Rod Bebee, who was Devin and Colin's grandfather. Our thoughts go out to them at this time of sorrow.

Love,
Brian & Patty

Tuesday, October 17, 2006

Another night, another concert?

Hi everyone:

This seems to be the year of concerts for Chez O'Mara-Croft -- this was my fourth since the summer. Tonight, I took PJ, Kelly and Connor to the Killers concert at the Congress Theater. The tickets were provided, at no charge, by the band and its management. Again, we find ourselves flattered and, at times, overwhelmed, by how generous people are when a family is experiencing some ripples. We have enjoyed the kindness both of those close to us and of virtual strangers; thank you to all.

For the two younger children, this was their first such experience, and they seemed truly jubilant. At the end of the concert, the band's drummer tossed a drumstick in our direction; the stick hit the ledge of our balcony, mere inches from PJ, but fell to the crowd below before he could get his hands on it. We all reacted like this was an injustice of the highest order.

While we were out jamming to music, Patty enjoyed a relaxing evening -- basically, a whole lot of nothing -- and that was, for her, exactly what the doctor ordered. We certainly missed her company tonight at the concert, but I think we're all glad she was able to just kick back and take it easy for an evening. For my part, I had a great time with the kids. With everything going on these days, it was such a heartwarming thing to hear from Connor, "Dad, I think that was the best day of this year."

Love,
Brian

A short note for Tuesday

Hi everyone:

I'm too busy to write at length right now. Patty is doing better than usual today, although she still felt a bit shaky in the earlier hours. I'm heading downtown for the concert with the kids after school today, so I'm rushing to get stuff out the door. More later if there's anything new...

Love,
Brian

Monday, October 16, 2006

Hong Kong Tubey

Hi everyone:

Patty and I were debating some point the other night. As is typically the case, I was trumping her argument, so she decided to take a different tack to persuade me:


I abhor violence, don't you?

Love,
Brian

Monday--and a whole lot of nothing

Hi everyone:

It's starting to feel like I should only report Patty's days without nausea; regrettably, today isn't one of them. On the plus side, she has made it through three full mornings without vomiting, but just barely.

We had a nice evening at the new (and as yet unopened) restaurant Neil will be managing in Oak Park. Patty was able to catch up with her friend Jean, we were able to get to know Jean's husband Jack, and we were able to spend some time with Neil, Sharon and our nieces Amanda and Elizabeth. How's that for social multitasking?

We have no major plans for today -- I'm working through a project and Patty is relaxing on the sofa. Patty has been feeling anxious today, although she can't put a finger on why. When pushed to assess herself, Patty said she thinks the uncertainty about what doctors may be planning for the future is starting to weigh upon her. Tomorrow, I will be taking the three kids to the Killers concert at the Congress Theatre -- that promises to be a bit of a late evening on a school night. Given the other stresses these kids are shouldering these days, I think a bit of haze on Wednesday morning is probably not a huge problem.

If more transpires as the day progresses, I'll be sure to let you know.

Love,
Brian

Pics from dinner last night

Neil



Jack & Jean



Patty with nieces Amanda & Elizabeth



Sharon & Brian

Sunday, October 15, 2006

Patty tries coke syrup

Hi everyone:

As mentioned yesterday, Patty has been trying Cola Syrup to help fight nausea. As you can see, Patty just loves the stuff. Actually, though, she thinks it might be making a subtle difference.

Love,
Brian

So-so Sunday

Hi everyone:

As is the case most days, Patty started her morning feeling nauseous, although she claims to feel a little better today than yesterday. Early this evening, Patty and I plan to be dining with Jean, a long-time friend of Patty's, Jean's husband and Sharon. Neil is now dividing his time between downtown and Oak Park, and this evening should allow us to sample a new menu for the Oak Park location. Of course, I had to use qualifiers like plan to and should, because we never know how our patient might be doing as the day progresses.

Last night, I wandered over to Kickers for about 90 minutes, and then came back home to watch movies with Patty. We finished Anatomy of a Murder, an Otto Preminger flick neither of us had ever seen. It's funny how I can be surrounded by friends, and truly enjoy their company, but still feel like something is missing if Patty is out of commission. Making jokes that are crude to the point of being shocking loses its luster if Patty isn't there to look mortified. At home, Patty was able to sit up and chat with me, but I can tell she now feels poorly most of the time. This is one of the mysteries for us -- if these drugs will forever be part of Patty's drug regimen, how will she ever live a life in which nausea isn't a significant part?

Every once in a while, as Patty encounters new medical challenges, I feel like I gain new, minor insights into what it's like to live with someone who is ill. In many cases, these experiences lead to new discoveries about myself. For example, I noticed yesterday that I have a nearly obsessive habit of checking for a pulse (or watching for the rise and fall of sheets) every time Patty is napping. Most nights, I wake a couple of times, and again check for a pulse. When I think about it, the process seems a bit morbid and pointless, and maybe even a little pathetic, but still I do it. I've also noticed that every time Patty makes a sound in her sleep, I presume she's in some sort of pain; yesterday, when she whimpered at one point, I thought that maybe her ICD had fired again. I also positioned my arm under her nose so that I could feel her breath. Wow, this is really starting to sound like a Woody Allen monologue.

My lunch is ready. These days, there's little for me that takes priority over eating, even though I think I'm starting to bear an uncanny resemblance to Orson Welles in the later years. Food seems to be my crutch, and I have been leaning on it pretty hard. I'm thinking I need to shake the dust off the Rollerblades and get back on the streets. Patty and I do walk from time to time, but we're somewhat limited as to how much cardio we can do together.

Have a great day.

Love,
Brian

Saturday, October 14, 2006

Little relief, and the wisdom of mothers

Hi everyone:

I think this photograph pretty accurately depicts how Patty is feeling today. Every time I've looked over at her to check on her condition (which I seem to do more and more these days), she's had this same deep furrow in her brow. I know that these seemingly endless days of nausea are bringing Patty down emotionally, and I wish there was some way to provide her with relief. On a tip from PJ, who in turn received a tip from a friend, we are going to try "cola syrup" to see if it helps settle her stomach. When pills that cost $45 each don't keep nausea at bay, one becomes a skeptic, but we may as well keep open minds.

Before I started writing this entry, I chatted on the phone with my Mom, who noted that I had not posted a blog entry yesterday. She mentioned that when there isn't a posting, she and my Dad worry about what may have happened. It then dawned on me that there may be others of you who feel anxious if nothing appears--so I'm going to try to make sure I post something everyday, even if it's only to offer that nothing is happening. Hey, Mom -- do you feel like visiting with some date squares, Wisers Deluxe and tomatoes? There's no snow here anymore, so the roads are clear.

Both yesterday morning and this morning, Patty felt pretty rough, although she was spared her regular rounds of vomiting (but just barely.) By later in the day yesterday, Patty had improved somewhat, and even accompanied me to Kickers for a few hours. I think sometimes she chooses to participate in activities even while sick, just so she can still feel like part of the human race.

At the club, we visited with our neighbors/heroes Kevin and Denise, and with Kathleen and Don. The ALCS game between the Tigers and As was on the TVs; it still depresses me not to see the Sox going for a repeat. We came home around 10:30, and were in bed by midnight.

Today, I cooked a ridiculously rich and almost-certain-to-be-harmful variation on carbinara sauce. I'm pretty sure I'm now hearing it rub against the walls of my arteries. Patty has been sofa-bound for most of the day so far. Later this afternoon, I may wander back over to the club for a couple of hours for their Oktoberfest bash; I suspect Patty will just catch up on some sleep. With any luck, I'll win some big cash in the cow drop challenge.

That's the latest -- more later if there's more to report.

Love,
Brian

Feeling a little better last night



It's almost scary how much I look like Brad Pitt

Thursday, October 12, 2006

Frosty thoughts for a Thursday

Hi everyone:

Although I find snow to be picturesque over the winter holidays, I find it a trifle intrusive in early October, and even more so this year. This morning, when I faced a mini-blizzard out my office window, I found its presence especially unsettling. I guess a part of me really feels like our family lost much of this summer to the world of medicine and to an existence in which nausea and fatigue are ever-present members of our inner circle. I'm whining, I know, but I am a bit bitter at times that illness seems to steal into a family's happy world and attempt to make off with its dreams.

In summers past, Patty and I would spend several evenings a week in our backyard, enjoying a fire and a glass or two of port. On weekends, we would go on road trips with no planned destination, just for the joy of discovering something entirely new together (like the funny red hat in Morris from a much earlier post.) Some nights, even if we knew we had important plans the next morning, we would be so absorbed in conversation that we would keep talking until the wee hours. Throughout our relationship (now over six years), we have been more-or-less inseparable companions -- perhaps even at times to the exasperation of others.

These days, our fires are much more modest and confined to our family room fireplace; our road trips are more often about getting Patty to a plasmapheresis appointment than about exploring a random, unknown road; and most late evenings usually translate into rough next mornings for Patty. Although we still spend much of our time together, Patty sleeps much more often, and I seem to be forever running errands. For some reason, the snow this morning reminded me about how this was a very different sort of year. What's more, Patty again started her day with a powerful round of vomiting, and she can barely move for her nausea, so the snow wasn't the only cue that we're not in Kansas anymore.

Even with these maudlin thoughts, though, I know that both Patty and I believe that there is so much in our life that is absolutely amazing. In our home, we see much more laughter than sorrow or anger. We have five amazing children who fill us with pride. We have people around us who care, and who will give of themselves freely. In the young people we meet on the sidewalk, I see the influence of an adored teacher. And, no matter what happens, I know that I have a soulmate who wants nothing more than to enjoy many more wonderful campfires, Saturday drives and all-night chats. Next summer, perhaps?

As I was writing this blog entry, Neil called and, in a state of nearly unadulterated joy exclaimed, "Isn't the snow amazing?" Well, even though I'm not wild about the weather, there's something to be said for a sunnier outlook.

Love,
Brian

Wednesday, October 11, 2006

Before this blog was born

Hi everyone:

Many times, people have asked us, "What exactly happened?" in reference to Patty's heart attack and progression of heart failure prior to the creation of this blog. For those of you who are really interested in knowing the history, we have created a web page with what we can recall. You can find this information by clicking the link immediately below:

Patty's cardiac history before the blog

I will soon also place a link to this information in the list to the right.

As I reviewed the list today, I found myself amazed at just how much has transpired over the past two years...it's really pretty wild.

Love,
Brian

Goodnight, Mrs. Calabash...

Hi everyone:

So, what do all of you think of the rat nose on my lovely wife? Simmer down, I'm fond of the darn thing. In fact, it was one of the first things I appreciated about Patty -- that, and her natural red hair (wink, wink, wink, wink, wink.) I can make jokes like this because I have an enormous chin; in fact, when I did Maskbuilding 101 with Patty a week or so ago, it took me as long to finish the jaw section of my mask as it did to complete the rest of my face. Here endeth the deprecating section of this day's blog entry.

Good news, I suppose: Patty made it through the entire morning without throwing up, although it was a crap shoot for a while. As I write this, Patty is on her way to a dentist appointment. The new bridge her dentist installed a month ago decided to pop out last evening. Needless to say, given the amount of medical attention our patient has needed, someone wasn't too thrilled.

On Thursday, our family (sans Devin and Colin) will be making the first of what could be several visits to a therapist. It should make for an interesting experience, given the different personalities in our clan. I have to admit I was a bit resistant at first. We attempted counselling for the kids after Patty had her heart attack, and I think all of us were pretty uninspired by the counsellor's approach. Patty was the driver behind it this time and, in spite of my reservations, I think she was right to arrange this -- I can feel the chinks widening in whatever armor we've been maintaining. For example -- why does it feel at times like grief (or, at least, what I think grief must feel like) when you haven't even experienced a loss? It feels overwhelming and embarrassing at the same time.

Anway, let's stay away from the depressing nonsense. Did you happen to notice in the photo, under that legendary proboscis, that Patty is smiling today?

Love,
Brian


Turnabout is fair play

Tuesday, October 10, 2006

Still sorting through questions

Hi everyone:

Over the weekend, Patty and I were in touch with one of Patty's cardiologists. Essentially, we were asking this doctor if she felt there was a real chance to reduce Patty's antibodies to a level at which transplant would be safe. Further, we wanted to know if the doctor felt Patty could hope for a reasonable quality of life after a transplant. Our thinking was that if the doctor was pessimistic on these fronts, we might start considering pulling back on cytoxan to preserve Patty's quality of life now. We would still hope that, ultimately, a good heart would come through. This was not a hasty, or intentionally morbid, consideration on our part -- we just started to question whether or not there was a real chance of making things move along.

The doctor said that she had seen situations where months and months of treatment were needed to make any meaningful progress, so we should not presume (yet) that our hopes should be fading. She empathized with Patty's illness, but felt any hardships now should be rewarded with success down the road. So, based on the information we have right now, Patty's plan is to stay the course with cytoxan, IVIG and plasmapheresis. I just hope so much that all of this leads to a desirable outcome, and does not translate into endless months of nausea and anxiety for Patty. To be honest, I just want her to be healthy, happy and well for more than a day or two in a row. I don't want her smile to be always faintly masking pain and worry.

This morning, Patty vomited violently several times, and generally feels very poorly, with a pretty bad headache. Again last night, she was plagued by unusual heart rhythms as she tried to sleep. The doctor told us that we might expect such arrhythmias with Patty on milrinone, and we should not be concerned about a great risk since Patty has the ICD in place. Of course, Patty doesn't want to be zapped again, but she certainly doesn't want the alternative, either.

The bottom line with all of this is that, at this moment, Patty and I are frustrated and worried that all of this may ultimately be for naught. Having said this, we also trust her doctors to be straight with us about prospects each step along the way, and we know everyone is pulling for her. So please don't worry too much because we're a bit pessimistic -- we could be in glorious spirits tomorrow. One of the things we're learning through this journey is that there are many, many emotional ups and downs; in our life, the ups are amazing, and the downs are usually just hurdles to overcome. Please keep our patient in your thoughts and prayers...

Love,
Brian

Monday, October 09, 2006

Columbus Day musings

Hi everyone:

There's not much going on around here today. Patty started the day feeling nauseous again, but seems to be doing okay now. She awakened three times during the night with unusual heart rhythms, which was a bit unsettling, since we're not really sure what this means. Something similar happened Saturday night. Patty thinks that sleeping on her side seems to exacerbate things; again, we don't know what that might suggest. We'll bring this up with doctors this coming week.

We're taking Neil to the train this afternoon, and will be getting the kids back at some point. Hopefully, by tomorrow, we'll start getting some new ideas and answers about next steps for Patty. We're still struggling with sad moments, but have also had a great time with Neil and others this weekend. And, man oh man do the Bears look great this season so far. More later if there's more to report...

Love,
Brian

Easily amused? You betcha

Sunday, October 08, 2006

Lots of visitors

Hi everyone:

In spite of the not-so-great news from Friday, our home has been a bustling place these past couple of days. Neil, Kathleen, Don, Jim and Trish have all been with us at one point or another, and several others (Cindy, Sue, Dave, Mom, Dad, etc.) have been in touch by phone. On Friday night, a group of us visited first at our house, then at Kickers, and then back at our house. Although we talked about the PRA results in general terms, we spent most of the first night of our weekend just being light and fun.

The kids are camping with Steve. Almost as soon as they arrived at the campground, Connor sustained yet another minor injury, which seems to be his wont these days. Alec, a neighbor and friend of Connor, tagged along for the trip. Much of the rest of Patty's extended family is camping in Wisconsin this weekend; we would have liked to join them, but things here are just too chaotic these days.

Whenever Neil visits, he and I seem to spend a lot of time experimenting in the kitchen. This weekend, we have enjoyed poutine (a Canadian dish of fries, brown gravy and cheese -- don't knock it until you try it) and homemade Italian beef. Last time, we invented a "lasagna" version of shepherd's pie. For some reason, Neil is almost always successful at keeping us from dwelling on hardships, and the kitchen provides many avenues of catharsis.

On Saturday, Patty and I went for a walk, and started to talk about what the future may hold. Understandably, Patty is growing frustrated with a regimen that keeps her sick much of the time with minimal returns in terms of protecting her long-term prospects. As we discuss a future course of action with Patty's doctors, we'll share the thoughts and decisions with you here.

This morning, Patty has been vomiting violently and battling severe nausea. This is not really a surprise -- whenever the Cytoxan dose is increased, Patty's degree of illness is also amplified. This is the biggest conundrum -- it's possible the drugs can help bring down the antibody level, but at what cost in quality of life? I feel so helpless, watching her burst into tears, fighting wave after wave of nausea. I guess it's time to go cook something...

Love,
Brian

Friday, October 06, 2006

Some pics

From our walk the other day



Battling nausea earlier this week



PJ with his friend Tori (left) and girlfriend Kelsey (right)



Thursday's school visit (with Heather)



Yesterday's round of IVIG

Happy endings?

Hi everyone:

I'm sorry the posts of late have been few and far between, and of little substance. Every time I sit down to write, the words elude me. I don't know why. In fact, as I write this, I know there is much to share, but I'm struggling, so please excuse the rough edges.

First, the PRA (panel reactive antibodies). After much prodding, we finally received a call this morning from one of Patty's cardiologists. We had hoped he would share evidence of some real progress in bringing the numbers down. Instead, we learned that the numbers have shot back up to their original levels, in spite of the added interventions. We are crushed by this news. It would seem that all of the nausea, all of the headaches and all of the fatigue appear to have been for nothing. In fact, the only outcome of all of this is that Patty will need to again increase her dose of Cytoxan, the drug that contributes most to her nausea. Early next week, doctors will powwow to determine what other options, if any, are available. This particular cardiologist offered that a transplant against positive crossmatch may ultimately be the only solution, albeit a less-than-ideal one.

Last night, we had a real scare. Patty returned from a bathroom stop in a state of near-complete breathlessness, and was fearing she would faint. When I checked her pulse, we were shocked to find that it was beating at more than twice its normal rate. We are convinced that she narrowly missed another jolt from her ICD. Her heart rate gradually returned to normal, but the experience was very unsettling. Several times over the past week, Patty has experienced unusual heart rhythms. Our hope is that this does not mean that the heart failure is making another big jump in severity.

Neil is visiting for at least part of the weekend. He is a great source of comfort for Patty, and has an uncanny ability to make me crack up when I most feel like cracking apart. Even through all this bad news, we're finding ways to laugh. Beneath the surface, though, we are starting to really wonder if a happy ending is in the cards. Patty will keep fighting, and we'll keep hoping.

I wanted to share a nice story with you. Patty and I stopped at the high school on Thursday, and we took a moment to visit with the art teachers and some of the students. When Patty entered one classroom, more than a dozen students jockeyed for position to be the next to give Patty a hug. There are so many people who care about Patty, of all ages and in so many different places. This is, of course, a great thing.

I'll write more soon...thanks for listening.

Love,
Brian

Thursday, October 05, 2006

The frustration continues

Hi everyone:

Today, Patty went through another round of plasmapheresis and is ready to start her next infusion of IVIG. Much to our disappointment, we have not yet heard the latest PRA results. I'll hold off on the longer post until I have more to report.

Cheers,
Brian

Keep your fingers crossed

Hi everyone:

I promise that I'll write a more complete blog entry later today. We're leaving in a moment for Patty's next round of plasmapheresis, and should hear today the latest PRA (antibody) numbers. Yesterday, I predicted that her Class I/II antibodies would be at 2/68, and Patty guessed 2/84. Last time they were checked, the higher number was at 92%. With any luck, the numbers will be much, much lower. More later...

Love,
Brian

P.S. Sometimes, when I don't share photos, the reason is that Blogger is quirky about attaching them. I'll try tonight to catch this up as well.

Wednesday, October 04, 2006

Plasmapheresis, etc.

Hi everyone:

Some time ago, Patty and I posted our "predictions" about when she would receive her transplant. I revisited that blog entry this morning, and discovered that I had chosen this coming Saturday, October 7 as the big day, while Patty predicted Halloween. We have not yet heard back from the hospital about PRA results, so we really have no good idea as to how plausible our predictions are. If the Cytoxan, IVIG and plasmapheresis have done their job, Patty's PRA could be low enough that a crossmatch could soon fall in her favor. If they haven't, we have to preserve the hope that subsequent rounds will do the trick -- and that her heart will keep fighting in the interim.

Patty underwent more plasmapheresis yesterday, which went just fine. She has been having some unsettling heart rhythms lately; when I felt her pulse at one point yesterday, it seemed like every twelfth heart beat was jammed up against the next. She has also been experiencing fairly powerful headaches, in spite of her pain medication, and sudden fatigue. I'm feeling frightened, frustrated and helpless, and I'm angry at myself for indulging some self-pity of late, so I'm going to sign off for now and write again later -- hopefully with some good news, some nice photos and a sunnier disposition. Thank you to everyone who is fighting at Patty's side through this. It means so much to her and to our family.

Love,
Brian

Monday, October 02, 2006

More sad news

Hi everyone:

We just wanted to post a quick note offering our condolences to Sharon and her family upon the loss of her father. Sharon played a significant role in caring for her father, particularly in the past few months. What's more, she has been a frequent visitor to our home during this time; we feel flattered that she still found time to check in on us, even when she was being pulled in many directions. Sharon, we're sorry for your loss.

Love,
Patty & Brian

A dismal Sunday

Hi everyone:

Well, the issue with the insurance company over Zofran seems to have been resolved -- notice how now I will only say, "seems to?" Walgreen's called the insurer, and the 30-day supply was approved. On the paperwork for the prescription, we are informed that our drugs cost us $15, and that our insurance has saved us approximately $2,700. I still find this shocking. What's even more incredible is that not even these drugs, at $90 per day, can keep Patty's nausea fully at bay. Yesterday was a case in point.

Our plan for yesterday was to clean the house, do some grocery shopping, and host Kevin's family for dinner. It became clear pretty early in the day that Patty would be unable to do much of anything. She vomited more violently than at any point previous, and was unable to leave the bedroom before early evening. She slept soundly for a good portion of the day, even with the typical chaos of kids moving around the house. When Patty joined me for the Bears game at 7pm, she offered that she would have no problem sleeping if we went to bed; she did, however, relax beside me for the whole game.

This morning, Patty is still nauseous, although not to the extent she was yesterday. As you might imagine, Patty is pretty worried about the future, because the drugs that contribute most to her nausea are certain to be part of her regimen for long after her transplant. She is also discouraged and depressed, because she wants to spend more time with both her immediate and extended family, and so often has to postpone such plans.

Later this morning, Mariska will visit and draw several vials of blood. Some will be used to check Patty's magnesium and potassium levels, to assess the risk of another shock from her ICD. More important, though, will be the vials that will be sent to UCH to check Patty's PRA levels. The bottom line, with all these acronyms, is that we should be getting a better sense about how successful these various procedures have been in reducing Patty's antibodies. From what I've researched, we cannot depend too much on one set of numbers as an absolute answer. In fact, it is not uncommon for a person to have a high PRA level through many rounds of IVIG and plasmapheresis before a breakthrough occurs. The worry here, of course, is about how long Patty's heart will hold out while we wait. I worry constantly about Patty. We worry constantly about the kids. I want so much to tell Connor, "Don't worry, Mom will be just fine," but I know that I can't offer such absolutes; all I can offer is the same hope that I hold, along with the promise we'll keep trying.

Of course, if the heart comes through soon and Patty gets through the process without tremendous complications, I'll be able to read back through these notes and realize what a melodramatic baby I've been. I hope so.

Love,
Brian