Dr. Costanzo visit

Hi everyone:

All the photos I was taking of Patty this morning were unflattering, so we decided to try a somewhat different approach--hence, the picture you see here. The mask was crafted around my enormous melon, so Patty's mouth is actually in the nose area somewhere.

Patty had an appointment with Dr. Costanzo yesterday afternoon. The doc agrees that the Rituxan/Cytoxan combo may not be working in reducing the panel reactive antibodies (PRA), but feels it is important to keep trying other options (rather than simply waiting and hoping for a perfect heart.) Dr. Costanzo thinks that total lymphoid irradiation (TLI) is the next logical choice. As always, we heard that this treatment is "generally well tolerated." We shall see...

Dr. Costanzo also noted that Patty's difficulty in tolerating Cytoxan and CellCept presents some interesting challenges after a transplant, because one or the other is typically part of the protocol. Instead, she may have to use one of the "old" immunosuppressive drugs. I am feeling nervous on Patty's behalf, because I don't want her to go through the whole process of transplantation only to find that the drugs she needs post-transplant only make her miserable.

Much to Patty's disappointment, Dr. Costanzo advised Patty against riding on roller coasters or other thrill rides. The issue is not one of fear or excitement being harmful, but a worry about sudden changes in blood pressure that could lead to other hardships. So, if we end up at Six Flags at some point, Patty will be joining me in the observer role.

We're still waiting on news about Colin's passport. The waiting is agony.

Love,
Brian

Worries -- real or unfounded?

Hi everyone:

If you've been reading this blog for some time, you know that I've adopted the belief that any symptoms that Patty displays, however benign they may seem, bear watching. Although she seems to be doing surprisingly well, especially in comparison to this same time last year, I keep fretting whenever Patty experiences shortness of breath or any other odd twinges.

Last night, Patty was bothered by soreness in her legs, even though she had not been especially active. This morning, she is very fatigued, and is still in bed even after a full night of sleep. Perhaps this is just her body telling her it's time to recharge the batteries after a busy weekend. Still, I worry...

Tomorrow, Patty has her regular appointment with Dr. Costanzo. If anything emerges from that meeting, I will of course share it here.

Love,
Brian

Back down to earth

Hi everyone:

After an action-packed weekend, we've settled back into our normal life, at least for a day or two. Patty felt a little nauseous upon awakening this morning, but improved quickly and seems pretty energetic. The kids were returned to us at 1pm, and are out enjoying the sunny day (except for PJ, who I would guess is sitting in front of a TV at Kelsey's house.) I've suggested that I'll get a bonfire going for the kids tonight; with luck, I'll be able to coax Patty outdoors for a while. Kelly is excited because her cousin Amanda plans to visit within the next couple of days. And that's pretty much our whole story for now.

I continue to receive calls about Colin's passport. The latest I've heard is that the Canadian Consulate here in Chicago doesn't think the request made by the passport officials really makes any sense. I'm inclined to agree. Our state representative's office continues to call with updates. Hopefully, this will all be resolved soon.

Love,
Brian

Special weekend Part II

Hi everyone:

Well, Part II of the weekend didn't turn out to be as exciting as Part I, although it was still very fun. Patty, Cindy and I attended the Roger Waters concert at United Center. Originally, we had been told that a short meet-and-greet would be possible, but later found out that they had decided against it. Instead, Patty was given a tour program signed by Roger, and some great complimentary tickets to the show.

The weekend was starting to get a bit long for Patty, so we didn't stay for the full show, although the staging was outstanding and the music was both familiar and well-performed.

Today, we visited Cindy's house for Caleigh's graduation; Caleigh is a wonderful girl, and an amazing student. We had a very nice visit, aside from my new-found phobia about cicadas, to which I was being exposed up close and personal for the first time. I will celebrate their departure. Of course, I was grateful to Brit for showing me that cicadas weren't anything to be afraid of, in the most horrifying and nauseating manner possible:

I am certain I will be plagued by nightmares for a very long time.

Patty's well today, but tired.

Love,
Brian

Special weekend part I

Hi everyone:

Tonight's blog posting isn't going to be about Patty's medical condition (okay, I will say that she's doing well today), about our recent passport woes, or even about the joys and trials of parenting. There isn't even going to be a film review. Tonight was all about fun -- remember the exciting weekend I mentioned? So, for those to whom we didn't blab about our plans tonight, here's a quiz for you.

Is the person Patty is hugging in the photo below:



(a) our daughter Kelly
(b) our friend Cindy
(c) Stevie Nicks
(d) none of the above

Did you guess?

If you guessed (c):



For the longest time, I don't think I've seen Patty dance as much, or smile as broadly, or seem so utterly thrilled with her evening as she did tonight. Patty was treated to a concert by Stevie Nicks (with the kind efforts of Stevie's assistant and her publicist), and then invited backstage. We waited there for a moment--sitting on a sofa in the middle of a parking lot (a bit surreal, to be sure.)

When Stevie emerged from her trailer, she walked over to Patty and then immediately said, "Oh my God, you look just like Meryl Streep...and that's a good thing." They chatted for a brief moment, and then Stevie gave Patty a very special, thoughtful gift that touched Patty deeply. When Patty asked Stevie for a hug and they embraced for nearly a minute, I felt like I was observing one of those Mastercard "priceless" moments. Stevie signed a T-shirt for Patty, and we were on our way.



I would give anything if Patty's every day could be as utterly magical as her night tonight. And she has another special night tomorrow. More soon...

Love,
Brian

P.S. One more moment to share -- Chris Isaak, while performing as the opening act for Stevie, walked around the entire venue, interacting with fans. His keyboard/accordion player also wandered around. At one point, he walked up behind Patty and asked her what flavor slushie she was drinking. When Patty said "Lemon lime -- would you like to try it?" the musician said "Sure" and took a chug. It was both surprising and funny.

Frustration part II (amended)

Hi everyone:

Well, the huge storm we were supposed to get last night turned out to be more whimper than bang; we saw a lot of lightning, but I don't know if we received even a drop of rain.

I just discovered this morning that the easing of the passport restrictions, which has now been enacted, will apply only to U.S. citizens wanting to travel to Canada or Mexico. Canadian citizens (like Colin) will still require valid, current passports. Frustrating...

Patty's not up yet. More later...

Love,
Brian

P.S. Since I posted this message, I received a call from an assistant to State Rep. Tom Cross, who had in turn been in touch with Denny Hastert's office. Although they don't hold much sway over Canadian authorities, it was nice to hear we have their support in investigating options. The regional reps in Canada are also in touch with the Foreign Affairs minister for Canada. I've copied the Candian consulate on our messages. I'm starting to feel somewhat hopeful that this can all be sorted out. Thanks to anyone who is pulling for us on this. Love...B

Frustration across the board (well, pretty much)

Hi everyone:

Today, day one of summer vacation (sort of), was a bit of a frustrating day. The chaos associated with full-time requests from kids is going to take some getting used to. PJ had no school, and Kelly and Connor came home after half-days. Kelly is hosting her friend Allison (she of the photos with Kelly last night) for a sleepover. Connor must have opened and then slammed the front door two dozen times today, each time allowing entry to a fly the size of a chickadee. Ahhh, summer!

I received upsetting news today. Apparently, getting Colin's passport renewed isn't going to be the piece of cake I had presumed. They are wanting documentation that doesn't exist, for reasons I cannot fathom. As things stand, I have only two choices: drive to Canada twice this summer, to pick up and to return Colin (the same passport rules do not apply to ground-based travel) or wait until Colin turns 16 in January before I have him visit (a prospect I cannot even think about.) The former would have some appeal under normal circumstances, but not with Patty waiting for a transplant. Devin is not an issue, because he is already over age 16.

I wrote the Member of Parliament in the region in which Colin lives; hopefully, he may be able to intervene on our behalf. Also, I saw some suggestion that the U.S. government might relax these rules in the near future. Please keep your fingers crossed. Or if any friends from Canada feel like visiting, and don't mind an extra passenger, we'd be happy to give you a comfy bed (okay, an air bed) and fine dining experiences (all the exotic forms of Hamburger Helper) if you'll bring the boys along.

The Sox games are making me insane, to the extent that Patty basically pleads with me not to watch. More and more, as much as I hope against hope for a turnaround game, I am heeding her wishes. Sigh...

On the positive side, Patty and I have an exciting weekend planned. I'll provide the details as soon as I can.

Love,
Brian

Kelly (the high-school student)

Hi everyone:

Kelly graduated from Plank Junior High last night. Here are some pics:

Miserable morning

Hi everyone:

Patty is experiencing some fairly profound nausea today, and may well stay in bed for much of the day. I think that some of her meds do not mix well with some of the food she eats, and the combination wreaks havoc with her system. Fortunately, she does not have the added whammy of the chemo drugs to try to tolerate.

Yesterday, we watched the DVD of The Secret of Roan Inish, an Irish fairy fale. Although the film had been around since 1994, neither Patty nor I had seen it. It tends toward the saccharin at moments, yet overall it is a very enjoyable family film.

Tonight, Kelly graduates from junior high. All through the year she has approached her schoolwork with tremendous energy and enthusiasm (and even a little frustration on those occasions when the grades didn't synch with her effort.) Many times, she worked on projects until late in the evening, and I don't think she passed over the opportunity to complete a single extra-credit project. As of this morning, she has "A" grades in several of her classes. We are so proud of her.

We are grateful that our children are holding up so well at a time in which they could have called for us to cut them some slack. Connor is moving on to junior high this year, a prospect that has us noting how old we're getting. Devin has been working during many of his outside-school hours, and earned a raise just weeks into his job; unfortunately, this same job will restrict the amount of time he can visit this summer. PJ is looking for summer work, and starting into some speech team activities. Colin keeps me up-to-date several times a week on the latest indie music, and still dreams of leading Canada one day. We miss Devin and Colin desperately.

Hopefully, our patient will soon make a rebound, because I can't imagine even wild horses making her miss the graduation ceremony tonight.

Love,
Brian

Some minor breathing struggles

Hi everyone:

Patty is having a less-than-stellar day in terms of respiration, after a night in which her legs were inexplicably aching; the former happens from time to time, and I'm not sure how to interpret the latter. The day before, Patty had some mild swelling in her legs; if this continues, this is a symptom that bears watching. We just got back from a 20-minute walk around neighborhood streets; Patty struggled with her breathing for much of our trek. All symptoms with Patty promote some degree of worry, at least in me; Patty still seems to take most of this in stride. I think she finds it easier to deal with the inevitable symptoms of heart failure than with the illness brought on by chemotherapy and other interventions.

We watched The Italian on DVD last night. I thought the movie was amazing. PJ liked it a lot. Patty was less impressed. My opinion is the accurate one.

Love,
Brian

P.S. Go Sox.

Another busy (and fun) weekend

Hi everyone:

Sorry for missing a couple of days in writing; things have been pretty hectic as the school year has been winding down. On the health front, there's little to report -- Patty still seems to be faring pretty well. She needs to go to Edward Hospital on Wednesday for bloodwork (lipids, etc.), but otherwise has little on the schedule in terms of medical commitments. Based on our last exchange with doctors, I think the plan for now is to just wait for a new heart and hope that Patty's existing heart continues to keep her going. So far, so good.

We had pretty late nights over the weekend, and Patty seemed to come through them without compromising entire next days. On Friday, we took Kelly to get a dress for both graduation and for Luke's upcoming wedding; thankfully, we were good bargain hunters and came away with something nice for relatively cheap.

On Saturday, we visited our friends and neighbors Denise and Kevin; after some coaxing, I spent some time in the pool tossing kids around while Patty relaxed and chatted. Yesterday, we grilled burgers and hot dogs while we hosted Patty's former student Emily, her girlfriend Amanda and PJ's girlfriend Kelsey for a visit. We played ladderball (fun game, at which Patty seems to be an instant pro) and then watched Pan's Labyrinth (first time for them, fourth for me.)

Patty and I set out for a walk early this afternoon. When we left our house, the sun was shining; twelve minutes later, we were running through a torrential downpour to get back to the house. I was surprised that Patty moved so quickly, and with minimal struggles to catch her breath when we arrived home. Without the chemo, perhaps Patty can enjoy a day here and there that, aside from taking a dozen pills, seems "normal."

Love,

Brian

Emily, Patty, Connor (with latex glove "balloons")

Amanda

Info from the docs, and a night out

Hi everyone:

Patty is doing well today after a busy night yesterday. She awakened with some nausea, but her meds pushed these symptoms back by late morning.

We heard back from University of Chicago Hospital late yesterday. One of Patty's doctors gave her blessing for our patient to discontinue the Rituxan/Cytoxan treatments, at least for the time being. As you might imagine, Patty was pretty happy to hear this, because it means she'll likely dodge some major nausea.

The doctor also confirmed that she is receiving specific PRA antigen specificity information each month. If I understand correctly, this means that she is looking deeper than the 59%/99% number into the specific antibody types that are problematic. As she explained, she is trying to see if certain antigens have decreased, either in number or in strength. She feels encouraged by the fact Patty has fared well without the milrinone (the continuous IV she used to lug around,) and by the fact she seems "clinically stable" for now. She seems optimistic that if Patty can continue as she is presently, she has some time to wait for an appropriate donor heart. I keep worrying that we'll have another downturn like last year, and the timetable will become much more tense. Still, I guess the doctor's take is good news, so we'll focus on the positive.

Last night, Patty, the kids and I were the guests of the organizers of The Color Purple at the Cadillac Theatre (thank you, Jennifer.) Everything about the show--the sets, the music, the humor, everything--was amazing. By some strange coincidence, we attended on the same night as a group of teachers and students from Oswego High School, so Patty was able to catch up with a couple of former colleagues.

Before attending the show, we stopped at Parky's in Oak Park, which Patty insists has the best french fries in existence. While I will agree that the fries are good--the massive oil stain seeping through each paper bag will attest to that--I won't go so far as to say they are the best I've ever had. I will say, though, that their burger is pretty noteworthy.

More soon...

Love,
Brian

Bumblebees, misplaced paint, etc.

Hi everyone:

I'm sorry I've been so bad about keeping the blog up to date lately. When we haven't been really busy with work and/or personal commitments, I've been feeling under the weather and not very enthusiastic. If anything of consequence happens, I will do my very best to write, so please don't fret if there's nothing new here. All in all, Patty has been doing well lately, although she's not feeling her very best today--nothing specific, just some general malaise.

Last night, while Patty and I were watching an episode of Law & Order, we saw something about a "bumblebee" tone for phones that adults generally cannot hear. Kids use these tones on their cell phones so that they can secretly know when calls are coming in. Of course, PJ was excited to hear about this, and conducted some tests. I can hear a 15.8khz tone, which can normally only be heard by those 30 and younger. Patty doesn't hear anything until 12khz, which is the 50-and-younger range. I will say that the first tone I was able to hear was acutely unpleasant. If you would like to test yourself, go to http://www.freemosquitoringtones.org/

Early in the evening yesterday, we attended the Fine Arts Banquet at the high school. PJ was recognized twice, for his efforts in Art and Drama. As a centerpiece in each table, students arranged objects that represent various fine art activities. As Patty walked past the table with the centerpiece presented below, she launched into an immediate rant about the condition of the cutting mat; from what I understand, they are expensive and shouldn't be used around paint. I just laughed, because I don't think I've ever before seen anyone set off by a table decoration.



Love,
Brian

Happy Memorial Day

Hi everyone:

Patty is well today. We are planning to visit our friends Jim and Trish for a mid-afternoon meal and perhaps a swim in their pool, which has been heating up all weekend and is currently at around 90 degrees. If I choose to multitask, I may be able to concurrently get in some exercise and also hard-boil a dozen eggs. A few of the clouds overhead seem like they could bring rain; hopefully, we'll dodge the bullet.

Patty is going to postpone her rescheduled Rituxan/Cytoxan infusion until we hear back from her doctors about a longer-term plan. It's possible she may receive it on Friday of next week, if her docs convince her of its value. The numbers come back the same every month, so we're not sold on the idea that this is a successful treatment. Besides, each time she receives the drugs, her insurance takes a huge hit (I think around $20,000); that's a lot of money for medicine that seems to be of questionable value for Patty.

Have a great day, everyone.

Love,
Brian

A long Friday leading into a long weekend

Hi everyone:

Yesterday, Patty did not receive chemotherapy. After enduring a comedy of errors that lasted from 8:30 am until after noon, all without Patty receiving a single drop of Rituxan or Cytoxan (or even having an IV line put in place), we decided enough was enough and walked out. We have rescheduled her appointment for Tuesday, although Patty is seriously considering refusing the treatment until we get more answers about why it is still part of the plan (since it doesn't really seem to work and just renders Patty ill.)

I had a conversation with Dr. Costanzo while Patty slept yesterday afternoon. She said that she continues to feel disappointment that Patty did not get the heart that was a negative crossmatch, and shares our worry that we may wait a very long time before another such heart may become available. She did say, though, that she isn't especially concerned about Patty's atrial fibrillations; the sense I got was that the doctor feels they go with the territory with heart failure. She will be in touch with the transplant team at UCH to see if we can better nail down next steps for our patient; when we get their thoughts, I'll share them here.

Patty is not feeling well today, although this time we can't blame chemotherapy. She has seemed quite fatigued over the past couple of days, and has surprised me at moments with a sudden search for a missing breath. We visited with Jim and Trish next door for a while last night (and were well-fed in the process), and then went out to play a game of pool at Kickers. Tonight, we have Kathleen and our friends Kevin and Denise visiting.

Love,
Brian

P.S. We did manage to squeeze in a film here and there lately. The movie Venus, with Peter O'Toole, is exceptional, even if its characters behave in reprehensible ways at times. I was very impressed. The documentary Who Killed the Electric Car? was also compelling, if unsettling.

A-fib findings

Hi everyone:

As I was logging on tonight, I noticed that this is the 454th entry in this blog since we started it last year. Wow. Thanks for sticking around.

Patty sent in an interrogation of her ICD this afternoon. She has a small (and pretty cool) device here at home that communicates with her ICD and then transmits this information to the techs at Edward Hospital. The hospital can then immediately tell Patty if there are any anomalies; unfortunately, some irregularities did show up. Apparently, on several occasions, Patty has been experiencing prolonged atrial fibrillations, some lasting up to 28 minutes. My understanding is that "a-fib" incidents involve inconsistency in pace between the upper and lower parts of the heart. Although most people are asymptomatic, doctors take atrial fibrillations fairly seriously, especially in patients with heart failure. Sometimes, the irregularity in heart rhythms leads to clotting, which can result in stroke. Needless to say, Patty would prefer to avoid a stroke. She may be put back on Coumadin, a blood thinning medicine, to reduce the risk of dangerous clots.

Tomorrow, Patty has another round of chemotherapy scheduled. We haven't been able to connect with her doctors to question the value of continuing this treatment, so she's just going to go ahead and endure another round. I guess we'll plan on a lower-key weekend.

Love,
Brian

Working girl

Hi everyone:

Life has been relatively uneventful around here over the past couple of days. Patty dropped in at her school yesterday for a meeting with a colleague and, as pictured, is on the computer working on plans for a part-time return to work in the fall. I can tell she's getting excited, and I'm excited for her, but I have noticed that her enthusiasm exascerbates my worry. I don't want Patty taking on too much, too quickly, as is her wont. I'm hoping that Patty's colleagues and students will help slow her down from time to time.

As I have mentioned several times lately, Patty seems pretty healthy right now; most people who see her comment on how great she looks. I think all of her doctors would agree that she's done better than most in living with heart failure and autoimmune disease. We both know that she could have a sudden downturn at any time, but for now we're enjoying the fact that she has kept herself going so strong. She is taking daily walks to improve her stamina, seems to be breathing fairly well even in the heat and humidity, and just seems to be more a part of every day around here. Let's keep this positive streak going so that when the heart finally does come, Patty will be quick and strong in recovery.

Love,
Brian

Bad news, slow in coming

Hi everyone:

We received the long-overdue PRA results today (these of the misplaced sample.) Unfortunately, there has been no change in Patty's numbers, which suggests that the Rituxan and Cytoxan therapies have been ineffective, at least in a statistical sense. Patty has asked her doctors to consider other options, or to at least think about discontinuing this course of action. She may ultimately follow their wishes, but both Patty and I believe we should challenge the status quo from time to time. After all, Patty is the customer.

Of course, the doctors will want Patty to persevere, because we think they see the perfect match that Patty almost received to be some sort of portent of good things to come, and an indication that they are making progress in knocking back the antibodies. I hope they're right. At those times in which our sky seems to be falling, I worry that the "perfect" heart was a once-in-a-thousand chance that may be long in returning. There is another part of me, though, that knows that this story simply must have a happy ending -- and that the rest of this is just part of the drama.

Patty is having a pretty good day today. She's been a machine, tackling laundry and some other cleaning tasks that I of course would never have realized were in need of attention. We are going for a walk in just a moment, and Kathleen is stopping by, so I'll sign off. More soon...

Love,
Brian

Movie night

Hi everyone:

Patty and I originally planned to enjoy a quiet evening at home, but instead opted to take in a movie at Cantera 30. We saw Away From Her, a Canadian film about a marriage forever altered by the wife's descent into Altzheimer's. Although I thought the film felt slightly forced at points, and Patty felt it was a few minutes too long, we both came away feeling it was well worth the few bucks for tickets (and for popcorn, of course.) Some of the dialogue was quite thought-provoking, and sensitive moments were presented without being too maudlin; this was a pleasant departure from the many, many flicks that are either stupid or saccharin.

On the days when there isn't much going on I fill the space with mini-reviews of movies or observations about the Sox (sigh), or I just tell you about one or two things that were part of Patty's day. I realize that this information can't be that compelling, and that it doesn't stick to the overall theme of the blog, but I am glad to be able to talk about our life, including those aspects that are in no way medical, and we derive comfort from knowing you are checking in. Thank you.

We have been kid-free for much of the weekend. PJ's final performance of Damn Yankees! was tonight; we haven't heard details, but we presume it went fine. Kelly is away with her Uncle Joe and cousin Caleigh at a waterpark hotel. And Connor called me late in the Sox game today and asked, "Hey Dad...how are you holding up?" As distraught as I was about the game, I mostly cheered up after Connor's call.

Patty is in bed; for her, this was an ambitious day. She really seems to be doing pretty well these days, knock on wood. I hope she receives a heart soon, while her body is strong enough to bounce back quickly after the surgery. Enough for tonight...more tomorrow.

Love,
Brian

Lots of nothing

Hi everyone:

There's not much happening with us today. We went out for a low-key lunch and did some window shopping at the Outlet Mall in Aurora. Now, Patty is settling in for a nap and I'm going to watch the Sox/Cubs game; hopefully, the outcome will be better today. If anything else transpires, I'll be sure to write.

Love,
Brian