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.

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

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

...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

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

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

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

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

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

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

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

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

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

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