Tuesday, July 31, 2007

Battling bureaucrats

Hi everyone:

Patty spent part of her day dealing with issues associated with her return to work. Although the official start of school is the final week of August, Patty cannot start until September 1, because she would compromise her eligibility for disability benefits if she had to take time off work during the school year (such as, for example, if she received a donor heart.)

Our patient has had a pretty decent day, overall; aside from some fatigue and a little swelling, she was just great. We probably will opt against a walk again tonight, because the heat and Patty don't really get along.

Love,
Brian

Monday, July 30, 2007

A visit from Nora and MB

Hi everyone:

Patty has stayed indoors all day today, so her swelling and shortness of breath have not been factors as in days past; we may opt against a walk tonight so as not to tempt fate. MaryBeth dropped Nora off for a visit, and is joining us for a pasta dinner that Patty has been preparing. Other than a short run to the library, and some fun next door in our friends' pool, we've had yet another mostly uneventful day. More chills and thrills soon...

Love,
Brian

Sunday, July 29, 2007

Slow Sunday...

Hi everyone:

Patty continues to experience mild swelling in her hands, and some challenges with her breathing, but otherwise is faring well. We went to the local pool today, and for a walk this evening; Patty is trying to be as active as possible in the hopes of improving her stamina before returning to work. We still have heard nothing back from doctors, so the future of Patty's treatment is uncertain.

I'd share more, but, well, there just isn't much worth mentioning.

Love,
Brian

Saturday, July 28, 2007

A day at another park

Hi everyone:

Patty, the kids and I were the guests of our beloved White Sox on Thursday; what's more, the Sox were kind enough to pull out a ninth-inning victory over the Tigers (and a third victory in the five-game series.)

As you can see, the club was very kind to Patty. We were given really good seats, and Patty received items signed by A.J. Pierzynski and Jermaine Dye, her two favorite Sox players. PJ was not able to attend, because of a commitment at school, so Kelly's friend Allison came in his stead.

We had a great day. The only downside was that the heat and humidity were a bit hard on Patty. Her fingers were swollen for some of the time, and we even had one scary moment -- when the Sox won the game, Patty jumped up to celebrate, and sat right back down because she thought she was going to pass out. She had no further complications, but it was a bit unsettling to observe.

Yesterday, Patty continued to have mild swelling in her fingers, and has had some challenges with her breathing. For now, we're chocking this up to the heat and humidity, although I hope this is a short-lived situation and not an indication of heart failure progression.

With MB's help, Patty has been sorting through some confusion surrounding her return to work. There has been some odd administrivia around Patty's eligibility for disability payments when she returns to work (to make up for the fact Patty is not fit enough to work full-time,) along with the protection she can expect if she has to go back on disability in the future. Insurance companies and retirement/disability programs, it would seem, are not in the business of being the friends of their members.

Please post comments when you get a chance; Patty still checks for them on a regular basis, and loves to hear from those who visit the blog.

Love,
Brian

Colin, Connor & Patty at the game

Monday, July 23, 2007

Mediocre meanderings

Hi everyone:

As before, our home continues to be a theatre of the mundane. Most days, Patty alternates between resting and tackling chores around our house; she continues to do well much of the time, although she still needs sporadic naps to get through the day. I have been trying very hard to drum up new information design work, but have been frustrated lately by how much things have slowed down; hopefully, I'll find myself atop another wave very shortly. For my work, summer and year-end always seem to be slower than the spring and fall months.

Patty is looking forward to her part-time return to work in a month; we can certainly use the break on the health care premiums. I know Patty will be happier when she's teaching again. I still worry about her stamina, but I know she doesn't want to be home-bound if she feels she can be productive.

PJ continues to work on the school summer play, and Colin and I have grabbed an hour here and there to catch up on months of missing each other. Kelly and Connor are still camping, and are happy today that some of their Krawczykowski cousins are joining them. We will have these kids back on Wednesday. Devin arrives on Patty's birthday, August 5, but can only stay for nine days.

I'll write again soon...take care.

Love,
Brian

Thursday, July 19, 2007

Long time, no see

Hi everyone:

I think this may be the longest stretch without a new blog entry, simply because there has been almost nothing worth sharing. For the most part, Patty is doing well. One day, she may be very tired and sleep for many hours at a time; on the next, you would be hard pressed to believe she has a heart condition at all. We have been enjoying Colin's visit, and are looking forward to Devin's arrival in a couple of weeks. Kelly and Connor are camping with Steve; PJ stayed back because he is doing makeup for a summer play at his school.

My friend Rocky recently left a message citing some interesting research into the repair of damaged hearts using a special treated patch. We had asked Patty's doctors about similar, innovative approaches in the past (for example, some success has been realized in letting a damaged heart "rest" using a special mesh sling); unfortunately, Patty's doctors have said that her heart is too damaged, and too much time has passed, for such approaches to work. I always find this surprising; I keep thinking, "If her heart is such a mess, then why is she functioning as well as she is?" This is a question we keep asking her doctors, too.

Please keep the ideas coming, though...perhaps one day we'll find an answer that will work for Patty. You can find information about the patch at MedicineNet.

Love,
Brian

Sunday, July 15, 2007

A day at the park

Hi everyone:

I haven't had much opportunity to write lately, because we seem to be especially busy, and there hasn't been a single thing of import to report on the medical front.

We went to Great America on Friday, courtesy of Jim at Six Flags. Patty was able to go on a couple of the tame rides, and the kids went on just about everything. I'm a coward about most rides, so I mostly logged a lot of miles walking around the park carrying backpacks and water bottles. I have some other funny stories to share, but I'll save them for when I can write at length.

The kids, except for Colin, are with Steve for a summer break. PJ will be back on Wednesday because he is starting work on a summer play; the other kids won't be back until later in the month. More soon...

Love,
Brian


Thursday, July 12, 2007

Healing blizzards

Hi everyone:

As you can see, we pulled out the big guns yesterday in the hopes of bringing Patty around -- a medium Butterfinger Blizzard from DQ. This was, of course, a standard part of the early chemo regimen, and remains a fairly reliable standby for those days in which Patty's stomach betrays her. The treat, along with a few bites of chicken noodle soup, represented the sum total of Patty's meals yesterday.

Patty never really bounced back yesterday (even with the treat), but she's much improved today. Her hands are pretty shaky, and she still feels weak, but she is far less nauseous. We are still waiting to hear back from her doctors about next steps; I suppose we should regard the lack of urgency in responding as a good thing. Days like yesterday do bring back much of the worry that had been set aside for quite a while.

Have a good Thursday.

Love,
Brian

Wednesday, July 11, 2007

Colin is here, Patty is miserable

Hi everyone:

Yesterday was a nightmare day, in some respects. Patty, Kelly, Connor and I arrived at O'Hare just before Colin was scheduled to arrive, at 3:45; unfortunately, Colin's plane didn't land until 10:19pm. In the midst of this wait, we needed to make a trip back to our home for Patty's meds, so we made two full trips to the airport yesterday. Having said this, our day wasn't nearly as grueling as Colin's -- he sat on the tarmack for two extended periods, the first of which was more than four hours. We were relieved, though, that Colin did ultimately arrive, and I have been thoroughly enjoying having him around. He has grown since his last visit, and is now only an inch shorter than me. He and his cousin Danny share a January 11 birthdate, and also seem to share body types...I wouldn't want to meet either of them in a dark alley.

Today, Patty is feeling miserable. She is congested, very nauseous and weak. She managed to make the move from our bedroom to the family room sofa, but has no energy for anything more ambitious. I checked her blood pressure, which was normal. She is just having one of those crummy days; fortunately, she doesn't have them often.

Love,
Brian

Monday, July 09, 2007

Neil away, Colin on his way

Hi everyone:

Neil left this afternoon after visiting for two days; his visits are always a special occasion for us. Patty overdid things a bit over the past couple of days and evenings (as is her wont), so she spent much of today resting. All in all, though, she still seems pretty strong; I hope this streak just keeps going and going.

Colin arrives tomorrow afternoon. When he's here, our household will be 6/7ths complete, at least for a while. The time always flies when the boys visit, and it seems like no time at all before we're saying goodbye again.

I'm sorry the blog entries of late are few and far between; there just seems to be very little of consequence to share. Perhaps we'll soon have the best and most hopeful of news to share; until then, we'll just keep pulling for Patty's stretch of good fortune to continue.

Love,
Brian

P.S. My ladderball skills are still sorely lacking...both Neil and Patty triumphed over me many times yesterday. I had my revenge when we played Trivial Pursuit.

Saturday, July 07, 2007

Neil's visit

Hi everyone:

Neil is visiting. He and I went shopping this morning for Mexican food ingredients, in response to a stated craving of Patty's. Later, we plan to go to the local batting cages for a while. Patty is fatigued today, after staying up pretty late with us last night; by "fatigued", I actually mean still in bed at 12:15. Other than that, there's nothing new to report.

Love,
Brian

Thursday, July 05, 2007

A fun Fourth

Hi everyone:

I hope everyone had a fun and safe Fourth of July. We enjoyed the company of many of our neighbors, with whom we fashioned a low-key, pot-luck barbecue dinner. Neighbors near and distant had invested in some pretty good fireworks, so we enjoyed a free show. We also played bag toss and ladderball -- my aim was way off, so I lost every game I played (Patty fared much better.) This picture was taken at around 11pm, after much of the crowd had gone home.

All through the day and evening, I kept thinking that perhaps a donor heart would come through for Patty, but the call never came. As always, I have really mixed feelings when I hope for a new heart for Patty, because I know what that means for another family. I wish doctors and scientists could make more pronounced strides with artificial hearts, so that tragedy doesn't have to be any part of this process. Patty said that she doesn't feel like she desperately needs another heart just yet, so to her the wait is just fine for now.

Patty had a mild, nagging headache yesterday which seems to have lingered into today. She also had an irregular heartbeat for a short time yesterday; it didn't persist, but every time it happens we find it a bit disconcerting. All in all, though, we really can't complain about how she's faring; in many ways, it seems like a mystery (and even a bit of a minor miracle) that she seems to be as strong as she is.

When Patty gets up this morning, I think her plan is to take Kelly to the mall so that Kelly can spend some of the money she has been saving from her birthday and graduation. Connor is at his friend Alec's. PJ will likely leave soon after he gets up so that he can spend time with Kelsey. With any luck, I'll have a very quiet house in which to work. Thanks for keeping Patty in your thoughts.

Love,
Brian

P.S. Colin is arriving next Tuesday, July 10, and will be staying for just over a month. Devin will arrive in early August for a nine-day visit. We're so excited.

Tuesday, July 03, 2007

Recharging batteries

Hi everyone:

Over the past couple of days, I have been starting to look at airfares for Devin and Colin to visit this summer. As this photo suggests, Devin has been keeping himself occupied with creative pursuits. I didn't think anyone even used clothespins anymore; I stand corrected.

Patty has been struggling with sporadic grogginess and fatigue since our return from Florida. I suspect she's just needing to recharge her batteries after an ambitious stretch of activity-packed days. I didn't help things yesterday by asking her to go to Ribfest in Naperville for a few hours. The Psychedelic Furs, one of my all-time favorite bands, were performing; they still put on a great show after all these years.
We are still waiting to hear from Patty's doctors about next approaches for trying to reduce her antibodies; perhaps it's time for me to drop them a follow-up note.

More soon...

Love,
Brian
Colin & Devin


Monday, July 02, 2007

Back to normal (mostly)

Hi everyone:

This morning has been largely devoted to unpacking from the trip to Miami for Luke and Nicole's beautiful (and touching) wedding. This was an ambitious trip for Patty, to be sure, but she held up very well throughout; only occasional fatigue would betray that she has a heart condition. Aunt Sue hosted our family in her room, which had breathtaking views of both Coconut Grove and of the ocean.

This trip was, in part, a celebration of firsts: the kids snorkeled for the first time (while I suffered my first-ever bout of seasickness); PJ and I ate beef intestines and sweetbreads (for the first and quite likely the last time); I played Wii for the first time, with Mike and Kevin, and discovered that I'm a big fan; and the first of the O'Mara grandchildren was married, thus confirming once and for all that our generation is starting to get old.

Below, just a few of the many photos we snapped during our trip:

The newlyweds' first dance



Just before the wedding



PJ, Myles, Mike and MB



Tommy and Connor getting ready for snorkeling



Eww...



One view from our balcony

Sunday, July 01, 2007

Back...but tired

Hi everyone:

We're back in Chicago, with a bunch of stories and a ton of pictures; tomorrow, once I've had a chance to sort things out and collect my thoughts, I'll catch you up. Patty is doing great.

Love,
Brian