The end of the story - for now

Forgive me if this final post is a little long.


By popular request I'm going to keep writing, but I think I'll shoot for once per week. And it will be much less a status report on the family, and more to entertain, enlighten, and generally make you say "Hmmmm....". I'll still write about the kids some, but return a little privacy to them. Look for new posts at The Harrigan Report, starting next week.

The cards and letters have continued to roll in here at home, along with many notices of donations to either the American Cancer Society or the National Ovarian Cancer Coalition. Thank you, all of you.

Rachel's burial service was at 9am today at Calvary Cemetery, attended by about 15 family members and led by Fr. Tom. It was a beautiful fall morning here in Evanston, and the center of the cemetery was quite peaceful. The service was short, and felt somewhat anticlimactic after last week's wake and funeral. The grave marker takes a while to get engraved, so it will be installed in about 6 weeks.


Calvary is a remarkable place, with graves dating back almost 150 years. There's something special about this connection to the past -- I feel the same way about the bits of church Latin we still learn and use. Our time here is not the beginning, nor the end; that's both a comfort and a challenge, I think.


Those of us who knew Rachel will miss her greatly, for a long time to come. But we'll get on with life -- you could say "because we have to", but I think it's better to say "because we're called to." We're called to recognize that the world is basically a good place, that death is a part of life, and that mourning is an appropriate phase, not a new lifestyle. We have things to do -- today, tomorrow, and the day after.


So let's keep Rachel in our thoughts and prayers, and also pray for each other, that we may find peace and carry on.


Agnus Dei, qui tollis peccata mundi, miserere nobis.
Agnus Dei, qui tollis peccata mundi, miserere nobis.
Agnus Dei, qui tollis peccata mundi, dona nobis pacem.



Pat

Advice

One business item first: My plan for child care is to find someone who can be at the house with the kids from 3-7pm Monday to Friday, and can drive. (I'll get the kids organized and out the door in the mornings.) Any references or recommendations would be very welcome.

You've probably taken your own lessons from this whole thing, but I'll offer up some advice on the practical side. None of this is especially novel -- it's just worth reinforcing, especially for those of us way up in our 40's and beyond...

• Make sure your wills are up to date. We did them ourselves 10 years ago, just using some software program I bought. I think Rachel's will work out fine, but I did see that our chosen set of guardians for the kids from 10 years ago no longer live in the same town as described, nor are they married to each other any more. So if I'd died at the same time this could have been a problem. (Obviously I'm going to update mine now in more detail, with a professional.)
• It would be good to think through your own funeral/burial preferences in advance, and ideally write them down. Think of it as a slightly morbid present to your spouse/loved ones: they won't have to try to figure it out on short notice some day.
• I'd been getting updates yearly from Social Security, reports showing how much I'd get if blah blah blah. Who pays attention to something so far away? As it turns out your dependent kids can receive benefits until they're 18 should you die, and for us it looks like that will be a reasonable chunk of money each month (to at least pay for child care, and then some). Check that report the next time it comes to you, and dial it into your plans.
• How much life insurance you need will depend, but I'm sure the answer isn't "zero" for very many of you. Think about whether what you've got would really meet the needs of those you would leave behind. (The kids and I will be OK.)
• Among the many things I've done this week is to get all the bills, payments, accounts, credit cards, titles, etc. put in my name, and to cancel others no longer needed . I don't think there's any way around this, but it would probably be useful to keep a list of all of these (with account numbers and phone #'s) somewhere. If there's a lawyer in the audience with a better idea, let's hear it.

There. Cheery, huh? Spend a little time on it anyway, just for peace of mind. (Mine, at a minimum...)

Pat

Carrying on

For those of you still following, a variety of items:

1. Maureen (O'Donnell) Rosati wrote a wonderful obituary for Rachel, which ran last Thursday in the Chicago Sun-Times and today in the Evanston Review.
2. Sheila is still putting together the "Team Rachel" photo album -- as a tribute now. If you haven't sent your picture to her yet (sheilab320@gmail.com), she'd still welcome it.
3. A number of people have contacted Evan about starting or participating in ovarian cancer fundraisers in Rachel's name. More thoughts are still welcome, and Evan and I will figure out soon what to take on. (Great idea, everyone...)
4. Something I didn't mention last week about the day Rachel passed away: One of the first visitors to the house was Gordon, a fellow St. A's dad who lost his wife last year in a car accident. He kept his two kids out of school to join our kids, and barged right in the house -- even though we'd barely met before. I don't know if he's a routine barger, but it turned out to be really welcome company last Tuesday. It was helpful to talk with him, and we had a beer again last night and went over a few things (including child care decisions and grief counseling). So the "St. A's Widowers Club" will probably keep on meeting every now and then. Our motto: "No More Members -- Please".
5. For everyone suffering from Rachel Withdrawal, here's a story for you: We started dating in the fall of 1989, just after her dad died. We hit it off right away. Before Christmas she told me that she'd already had handkerchiefs monogrammed with an "H" ("John Henry") for her dad, and wanted to know if I thought it would be appropriate for her to give them to someone else. I told her I'd be honored. She smiled sheepishly and said, "They're not for you..."

Pat

Slideshow

Thanks to Sheila for yet one more thing...here's the slideshow from the visitation, in a format that hopefully everyone can work with.

One final thing I forgot to mention about the funeral: Cheryl and Dell from the ICU both made it, and Dell was able to join the reception afterwards for a while. She was a little surprised at her celebrity, I think. We talked for a little while, and she closed with "Thank you, Pat, for sharing Rachel with me..."

Pat

Funeral

For the out-of-towners and folks who couldn't make it, some notes/thoughts on yesterday...

Mass

• St. A's was packed, including the choir loft
• Processional: "Let There be Peace"
• First reading: Proverbs 31 (reproduced below)
• Responsorial: Psalm 23
• Second reading: 1 Thessalonians 4: 13-18
• Gospel: John 5: 12-17
• Offertory hymn: Ave Maria
• Communion hymn: Be Not Afraid
• Communion meditation: Panis Angelicus
• Remembrances of Rachel by her sister Fran, Anne Hinkamp (college roommate), Laura Boylan, Evan Finamore, and me
• Song of farewell: Receive Her Soul
• Prayer of commendation: Irish Farewell Song
• Recessional hymn: Amazing Grace

I won't try to describe it any further, except that it was beautiful.

The reception in the gym and Lindley Park was very nice -- thanks to everyone who worked so hard to pull this together on short notice. I was really pleased to see some friends we'd lost touch with years ago, who heard about Rachel's passing and came to share their respects.

We had a bunch of friends and family over at the house all afternoon: a nice, comforting hubbub. About 5pm the exhaustion really hit me; I toughed it out until I could tuck the kids in, and then crashed.

The reading from Proverbs 31 seemed so fitting for Rachel that we put it on the Mass booklet:

"When one finds a worthy woman, her worth is more than precious gems. She reaches out her hands to the poor and extends her arms to the needy. She is a woman of strength and dignity and does not fear the days to come. When she speaks, her words are wise and kindness is the rule for everything she says. She watches carefully all that goes on throughout her household and is not idle. Charm can be deceptive and beauty fleeting, but the woman who recognizes the will of God and tries to do God's bidding shall be greatly praised.

Praise her for the many things she has done. These good deeds of hers shall bring her honor and recognition from the community, but more importantly, will make her welcome in the kingdom of God."

Pat

Visitation Day

It's 5am on Friday, and the house is quiet. I didn't sleep too well, so I thought I might as well capture yesterday's events -- especially for those who couldn't make it.

General

• I had a dentist appointment at 8am, and my first surprise "Sorry your wife died" encounter. The hygienist noted that I had rescheduled from a couple of weeks ago because Rachel was in the hospital, and politely asked how she was doing. When I told her she was in shock, of course -- it was the first time I've ever had my teeth cleaned in silence (which wasn't all bad...) There will be more of those to come, and I hope to handle them with as much grace as possible.
• Lots of last minute bustling at the house, and family coming and going. And food/drink being dropped off.
• I picked up the kids at 2pm from school; reports were that everyone did fine.

Visitation

• We had visitation for the immediate family from 3-4pm, with the casket open. Donnellan did the best they could with her, but Emmet had to ask, "Is that Mom?" Closing the casket for the general viewing was an easy call. We said the rosary together, and then opened up the doors.
• Sheila had prepared a beautiful slideshow of pictures of Rachel through the years, and that played on a big TV throughout. I'll figure out the best way to share that with everyone.
• I really appreciate how many people came, and the kind thoughts they shared. I recall standing in line at visitations before and thinking of what to say. It turns out it doesn't really matter -- the words all sort of blend together, but the feeling comes through.
• I've gotten more hugs in the last 5 weeks than in the rest of my life combined. It's funny with guys, as sometimes you get the full-on man-hug, and sometimes the handshake-and-hug-with-the-other-arm. And sometimes the awkward "Which hug are we doing?" shuffle, which is still just fine. Again, it's the feeling that comes through.
• Lots of people from school, and the neighborhood, and old friends of Rachel and mine, and Rachel's work. And more distant relatives on both sides.
• Dozens of people came from my office, none of whom had ever met her before -- including the president of the company. More than one person commented during the night how many lives Rachel touched, and that includes through me, I suppose.
• We had a couple of the contractors who worked on our house (here and on Grant St.) come, which surprised me. You know those long house renovation projects, when you say the plumber/electrician/carpenter "becomes like a member of the family"? There's apparently more truth to that than you'd expect.
• Several of Rachel's newest friends (the ICU staff) came through. One said, "In 22 years this is only the 3rd one of these I've been to. There was just something about Rachel and your family that touched us." I sensed that in the hospital, as previous posts indicated, but this reinforced it.
• Fr. Tom and Fr. Rich closed the service at 9pm with a prayer.
• The family gathering back at the house went on until late, mostly with telling Rachel stories, and mostly laughing (with a little crying). There will be more of those...

On to the funeral today. One thing I didn't clarify earlier is that the burial isn't today -- the only spots open at Calvary were for cremation graves, so after the funeral the body goes to Lombard for further processing. "And unto dust you shall return," a little faster for some of us than for others. We'll have a small interment ceremony sometime soon with just the family. But getting into Calvary seemed important -- Rachel was all about location, after all...

Pat

Final Preparations

I'm now a blogger, I guess -- while preparing everything for tomorrow and Friday I kept thinking "I'll have to write about this tonight..." But there will only be a few more posts here. It's the Rachie Report, not the Pat Report, after all, and her story's almost told.

• The kids lazed around the house today for the most part, and then Fi went for a sleepover at Maddy's. I'm sending them all to school tomorrow for the sake of continuity/routine.
• Sheila and Kathy have been working with me all day on a variety of things -- clothes for Rachel, a picture slideshow for the visitation, designing/writing the prayer cards and Mass booklets, hoteling the out-of-towners, etc. It's really good to be busy.
• It's sounding like there will be a big crowd on Friday -- school has been canceled, and we'll have friends old and new from all sorts of places.
• I visited several cemeteries this morning, and chose Calvary Cemetery in Evanston. It's the one right on the border of Evanston and Chicago, on Sheridan Road. From there you can see the two towns where Rachel lived for the last 24 years, and Lake Michigan, of course. I reserved two plots, one of which I hope not to use for a good long time.

Here's a funny cemetery story (!) to close with: Right next to those plots I noticed eight grave markers which were identical in design, but with different names and wildly different dates of death (early 1900's to 2008). I asked the cemetery clerk what the story was, and he said an eccentric old guy came in last year and bought eight plots at once. He then proceeded to unload seven containers of ashes from the trunk of his car, including those of his recently-deceased wife. He ordered all the markers and closed the deal, in a timely manner -- he joined them earlier this summer. (I did wonder what else was in his house...)

Pat

Arrangements

First, we're all doing OK. I spoke with the kids when they woke up this morning; there was some crying all around, but they had some friends over and other helpful distractions today. Ditto for me.

1. The visitation for Rachel will be this Thursday, September 11th, from 4pm-9pm at Donnellan Family Funeral Services -- 10045 Skokie Boulevard in Skokie (east of the Edens Expressway, just north of Old Orchard Rd.).

2. The funeral Mass is on Friday, September 12th, at 10am at St. Athanasius Church -- 1615 Lincoln Street in Evanston (just east of Green Bay Rd., south of Central Street).

3. A reception will immediately follow Mass, either at the Parish's "Lindley Park" (weather permitting) or in the school gym.

4. In lieu of flowers, donations in Rachel's name to either the American Cancer Society or the National Ovarian Cancer Coalition would be greatly appreciated.

Thanks again for all of your support -- I continue to be overwhelmed by your generosity of spirit.

Pat

Rachel Jane Harrigan 1961-2008

The end came pretty quickly -- her heart fluttered a couple of times, and then stopped at 12:40 this morning. She was unconscious and in no pain, and I was holding her hand. Arrangements TBD, but I'll post them here.

God rest her soul.

Pat

Peaceful

Briefly:

Rach has been unconscious since late yesterday. No dialysis or procedures today, and her heartrate and blood pressure have been relatively stable. She's getting morphine and Ativan now to ensure she's not in any pain.

Her ventilator is now providing 100% oxygen, but her blood oxygen content is continuing to go down (now at 80% saturation) due to her pneumonia.

Visitors today started to refer to her in the past tense; this was jarring the first time, but it's seeming more normal.

I wore glasses today instead of contacts, knowing it would be a crying day. I'm spending the night here with her.

Pat

Pneumonia

• Rachel had another CT scan today, and it showed she has a severe case of pneumonia. Whether this is the e. Coli and/or another bug is unknown -- but it's the probable cause of her fever, and is now also causing her labored breathing and decreased blood oxygen content (even with the ventilator).
• Her white cell count is down to 0.2, so her ability to fight off an infection is minimal. Antibiotics can help your immune system, but not substitute for it. They added a couple of antibiotics to try to fight the pneumonia anyway (amikacin and amphotericin).
• The doctor from Infectious Diseases who showed me the CT scans and explained the implications was very sympathetic, and pretty clear about the prognosis: "days, not weeks". Note also that we haven't seen any indication of chemo having a positive effect on the underlying disease, and in fact the CT showed some further organ deterioration in the abdomen. Joining us for this discussion was nurse Cheryl, one of the ICU mainstays; it was the first time I'd seen any of the medical staff cry.
• Dialysis this afternoon, aided by drugs to raise her blood pressure.
• I took the kids to see her again tonight, having explained the latest turn of events. Not much reaction from them -- it still doesn't seem "real", I think.

Where do we all go from here? I think it's OK to still hope and pray for a miracle, while expecting something less. I was reminded today of Mark 14:35-6: "He advanced a little and fell to the ground and prayed that if it were possible the hour might pass by him; he said, 'Abba, Father, all things are possible to you. Take this cup away from me, but not what I will but what you will.'"

Pat

Fever

No good news today, unfortunately.

• Fever all day long -- mid 102's, up to 103. Rach was out of it as a result.


• Dialysis was postponed, as her BP was a little too low to attempt.


• Her labs aren't looking good -- after yesterday's platelet transfusion her platelet count was up to 27 this morning (still low), but dropped to 12 by the afternoon. Similarly her morning hemoglobin level was less than desired despite her recent two-unit blood transfusion. And her white cell count is down to 0.4 (normal is about 4-10).


• Cause still unknown -- cancer/chemo/infection, or some combination, with no immediate way to address it. She did go back on one of the heavy-duty antibiotics (Colistin) last night, despite the risk of nephrotoxicity. I left this evening after she had just gotten 4 more units of blood and 2 more units of platelets.


• I think the ICU team is worried, as am I.

On the home front the kids took part in the Payne/Noyes garage sale with the Finamores, making a few bucks and decluttering their rooms a little in the process. Their visit to the hospital late in the afternoon was uneventful, and Fiona is sleeping over at Maddy G's tonight.

Pat

A Very Quiet Day

• Rachel was exhausted all day. She responded to a few questions with subtle nods, but that's it. Her fever was consistently in the 102's all day, despite ice packs and Tylenol, so I guess I'm not surprised.
• The source of the fever is still unknown, and still perplexing.
• Yet another new antibiotic today -- clindamycin, to address any issues in her lungs from what she aspirated yesterday.
• Paracentesis this afternoon.
• Thanks to Laura Maloney and Eric Miller for getting the "Team Rachel" shirts going -- details here

Pat

Chemo Effects

Just another day in the ICU...

• Today's labs showed some chemotherapy effects: Rachel's white cell count has now fallen below 1 (normal is about 4 to 10), and her hemoglobin level and platelet counts are low, too. She got two units of whole blood, a unit of packed red cells, and her daily dose of white cell booster (Neupogen). She was also put on yet another antibiotic (tobramycin) as a precaution against infection.
• That aside, Rach was remarkably awake and alert this morning. She asked for her glasses, and we watched some TV. It was nice to have her back for a little while...
• Uneventful dialysis mid-day, and likely paracentesis tomorrow (she's gotten pretty big again).
• Today's excitement came in the early afternoon, when Rachel managed to throw up and then aspirate some material into her lungs. A flurry of respiratory activity followed, and it took her (and the rest of us) a little while to calm down.

And barring any emergencies I'm going to try to make my "Book Club" meeting tonight at Bluestone -- there are a lot of books not to discuss. Plus there's beer.

Pat

Same Same

A boring day today...

• Rachel was out of it all day, with just a couple of responses to nurses/visitors.
• She breathed on her own for about 2 hours today (up from 15 minutes yesterday)
• Dialysis this afternoon, with the now-familiar struggle to keep her blood pressure up while it's going on.
• Still something of a fever -- it was 101.2 when I left this afternoon. This despite the fact that her WBC count is now down to normal.

Tomorrow marks Rachel's 4-week anniversary in ICU. This isn't where we expected or wanted to be coming out of surgery, but we all know it could have been worse. Today's special acknowledgement goes to everyone who has helped with meals, house stuff and kid stuff over that period -- thanks.

Pat

Team Rachel

At the hospital

• A little better again today: Fever down below 101, heartrate/blood pressure mostly OK, and she got in 15 minutes of breathing on her own (without the ventilator). Also more awake and alert, although that was only for a few hours this morning.
• Her tumor diagnosis has switched slightly again, to "rhabdoid/large cell variant of small cell carcinoma of the ovary", or something close to that. Google it if you please, although what you find will be gibberish to us non-pathologists (example here). I'll whine one final time about the complexity of cancer, as opposed to something straightforward like "Torn ACL", "Chicken Pox" or "The Suds".
• I brought her a "Survivor" head wrap today, and told her that she's not been voted off the island just yet. And she has immunity until the next Tribal Council. (I'm sure Fi will replace it with something more fashionable.)

Our new project

• Bothered that you can't do enough to help, especially from out of town? Here's your opportunity! We're going to put together a "Team Rachel" photo album to take to the hospital. Take a picture of you and your loved ones holding up a handmade "Team Rachel" sign, and email it to Sheila Barnes (Rachel's niece) at sheilab320@gmail.com. Or just PhotoShop the text in -- she's not picky. Sheila will assemble, print, and put the book together. Rachel knows how much everyone's pulling for her, and this will reinforce it with her even more. Thanks and bless you in advance...

Pat

Bald is Beautiful

At the hospital

• Rachel's just a little more alert today. Lots of sleep, and lots of daydreams (including mumbling, hand gestures, and smiles -- I can only imagine...)
• Still with the fever -- down to 101 periodically, though. That's obviously the primary short-term concern.
• Dialysis for 4 hours today.
• Over the last two days Rachel has lost a lot of hair, as expected. I believe Fiona will be going out in the next day or so to shop for scarves.

At home

• Lazy day for the kids today.
• Rachel's mom and two sisters are joining us for dinner, having just returned from her nephew Jeff's funeral in Florida.

Pat

Still out of it

Very briefly:

• Same fever and incoherence/unconsciousness -- more or less unchanged, for the last four days.
• Paracentesis this morning, with 3 liters removed. This seemed to help her heartrate, which is down into the 130's.
• She weathered the administration of chemo Round 2, so let's see how it works.

On a separate note, may all of you have a happy and safe holiday...

Pat

Out of it

At the hospital

• Fever all day long (up to 103), elevated heartrate (sometimes into the 160's), low BP, dialysis in the early afternoon, then the new chemo agent after. Rach was alert this morning for a few hours, but then just slept. I can't blame her.

At home

• Sheila and Kathy took over at the hospital, and I took the kids to the Cubs game this afternoon. This was a great break, and some good Dad-kid time.

Pat

Hut-One

Having spent the night at the hospital last night, I have no idea what's happening at home -- except that Kathy's in charge, so things are probably OK. A slightly different update:

Brain

• The MRI results came back, and Rachel only has one brain tumor! Yipee! Actually this is relatively good news, as it allows for the potential for surgical/radiative treatment down the road (nothing urgent). And no, we haven't told her yet.

Lung

• Persistent fever today(102+) and persistent heartrate in the 140's, probably due to the e. Coli infection in her lung. Note that we see some of the same doctors every day, and with some services we see a variety -- the Infectious Disease doc yesterday/today is very very guarded about the potential effectiveness of the new antibiotic. This "Dr. Gloomy" spooked me a little bit today.

Procedures/General

• She slept pretty well last night, except for the old lady in the room next door who started screaming at 4am. This woke Rach up, and her heartrate went to 165, which then set off her monitor, which woke me up. But we all calmed down and got a little more sleep.
• Sleeping is aided (in theory) by tuning in to Channel 4, the hospital's plinky, New Age, "Lullabies for Weirdos" music channel. Think of taking the moving walkway to Concourse C at O'Hare.
• Lots of written questions this morning. Some were sensical, some not so much. She knows she's sick and in Evanston hospital, I'm pretty sure she knows she has cancer, but any details are lost on her right now.
• Dialysis this morning, both for general cleaning (BUN/creatinine) and to remove yesterday's MRI imaging dye. Also scheduled for tomorrow, to clear the chemo agents.
• Chemo Round 2 started around 5pm -- same regimen as last time, but with slightly higher doses. She'll probably get an additional chemo agent (etoposide) starting this weekend.
• I haven't praised the ICU staff recently, but let me repeat what great care I think she's getting. With the two main day shift nurses we get, Amy T and Cheryl, I'm constantly reminded a) how technically competent they are, and b) how much they really care for my wife and your friend, Rachel. And the attending docs, nurse practitioners, respiratory techs, and everyone else show similar care.
• And of course there's our friend Dell, too.

Abdomen

• Let me also repeat how frustrating it is to not really know what she's got. The folks down in Hyde Park did some additional work, and now think that "small-cell ovarian carcinoma" is the most likely culprit. This is driving the change to her chemo regimen (see above).
• Having sacrificed all of Rachel's privacy, let's talk about her belly. From the surgery she has a vertical scar about a foot long; in addition her surgeon gave her "retention sutures" -- several ties about 4" long going crosswise, with plastic "bumpers", to hold her together. The staples from the primary incision were removed earlier this week, but the retention sutures are still in place. They'll probably be removed in the next few days, depending on how she does with re-filling of fluid. I was reminded of all of this when she showed some curiosity earlier today, and I had to explain it to her. In the meantime her abdomen looks like a really big football. And yes, I know, she's going to kill me when she eventually reads this.

That's enough for tonight. Although "Lullabies for Weirdos" would be a great name for a band.

Pat

Fever

Kind of a rough day, so Rach asked me to stay the night. I'm attempting to update this using my Blackberry.

Pretty high fever most of the day (over 102), which really wiped her out. Her heartrate ran in the 140's as well.

Dialysis today, and some PT, and down to Radiology this evening for an MRI. This should give a better understanding of the brain lesion.

She just started on a new antibiotic for her lung infection -- Colistin. They think she's got a really resistant e. Coli in there, and hope this will work.

On the plus side: She got moved to a new room yesterday, with a window. And Dell's back from Jamaica.

Lastly, as if her family didn't have enough to worry about, her nephew Jeff committed suicide yesterday. An extra prayer for Jeff, his brother Matt, and their mom Marilyn (Rachel's sister) is in order.

Pat

Two Steps Forward, One Step Back

Not a great day for Team Harrigan, but we've had worse.

• Some good news: Rachel had a bronchoscopy yesterday evening, where they looked down through her bronchial passage at the gunk in her left lung (remember that?). It didn't look like tumor, just infection. She'll be on antibiotics for quite some time to come, since it hasn't been improving at all yet.


• She was also breathing on her own for the whole morning, unconnected to the ventilator.


• The biomarker in the blood for ovarian cancer, called "CA-125", has reduced significantly in the last two weeks, showing that her initial chemo session is doing some of what it's supposed to. You'll hear more about CA-125 over the coming months, I think.

But-

• Last night she started to get confused again, and wrote a couple of goofy notes while I was there. Then overnight she pulled her NG tube out, and had to have the soft restraints put back on. She also wouldn't sleep.


• Today there was no note-writing, just silent mumbling. When she was awake she was confused, and often eerily wide-eyed -- we think she was exhausted from yesterday's efforts. When I wasn't in the room she had to have the restraints on; when I was there I was saying "Leave that alone, Honey" every 5 minutes or so.


• Later in the afternoon her heartrate ran up into the 140's, her temp to 102, and she slept. As they've often done with her fevers over the last few weeks they put ice packs next to her body and gave her Tylenol. So moving to a chair was postponed to tomorrow, and tonight is all about rest (chemically aided if need be).


• Next chemo session still planned for Friday, but she'll need to rally a little to be able to tolerate it.

On the home front Kathy's son Rob joined us today, so we're back up to two Robs, which is oddly comforting.

Pat

Skinny

At the hospital

• A pretty good day for Rachel. She was set on minimal ventilator support early in the morning, and managed it well all day long -- essentially breathing on her own. This is a big step toward getting off the ventilator and getting out of ICU. In addition she sat up (with some nursing help) on the edge of her bed for a few minutes. Tomorrrow she'll get out of bed and into a chair, for the first time in three weeks.
• Rachel's much more aware, but still can't talk due to the ventilator. Lots of written notes today, with almost indecipherable handwriting -- it's sort of a combination of codebreaking, Pictionary, and charades, but some questions and answers got across.
• One sensitive issue: We got last week's news about cancer spread while Rachel was out of it, so she doesn't know she has a lesion in her brain. I talked to her doctors today, and we're probably going to tell her tomorrow or Thursday. The combination of her awareness and communication issues make this tricky, but she needs to know.
• The tumor diagnosis is still a little murky, but doesn't appear to be germ cell carcinoma (per the U. of Chicago, and a consult to Indiana U.) The elevated tumor markers which pointed to germ cell are being attributed to "de-differentiation" of epithelial ovarian cancer. I never considered myself an expert, but cancer is certainly more complex than I thought, and more frustrating. We'll do the second round of chemo this Friday, with the epithelial ovarian regimen (taxol plus platinum).
• One thing everyone will notice once Rachel's home (or even out of ICU) is how skinny her arms, legs, and face have gotten. It's not a result of the cancer or chemo per se -- it's being bedridden for almost a month, including a couple of weeks with zero nutrition. I'm sure this loss of muscle tone is why her handwriting is so shaky.
• Aunt Kathy took the kids to the hospital in the evening, and had a very nice visit. It's a lot more fun for them when Rachel's awake and interactive -- still "Mom".

Pat

Mt. Everest

At the hospital

• A good day today. All labs trending in the right direction, at least a little. Rach slept comfortably last night, without the soft restraints.
• They've been trying to wean her from the ventilator almost every day -- she gets to about 20-30 minutes, and then it's too hard to breathe, her heartrate goes up, etc. Today she went 4 hours without a problem, and only stopped because she had a CT scan to go to.
• Rachel wrote out a few questions today on a pad of paper. Her handwriting was really hard to read, but I figured it out. Her first question was "Why am I in the ICU?" She had a few more that showed she's a little confused, but this was definitely a step forward.
• The neurosurgeon was encouraged enough by her progress to schedule an MRI for later this week, to undertand better the extent of the brain tumor or tumors.

At home

• First day of school today, and the kids stopped pretending not to be excited.
• Conor finished his ascent of Mt. Everest, i.e. the summer math packet. It was a long, hard climb -- we crossed the Marshes of Multiplication and the Word Problem Wilds, almost lost a Sherpa in the Great Quotient Crevasse, and finally climbed the rocky East Face of Division this evening. But it was worth it. (One underrated parental activity is taking the ol' SarcasmMobile out for a spin every now and then.)

Pat

Tired

At the hospital

• Rachel didn't sleep much last night, and seemed tired all day. She was happy to see visitors, but just dozed off when she felt like it. I think it's a combination of her fever (103 yesterday) and her still generally waking up.
• The night-shift nurse reported that when combing Rachel's hair this morning some clumps started to come out. Rach was awake for this discussion, and semi-consciously touched her hair for the rest of the day. It's the least of her worries, but still...
• I don't think I've shared how she's the current ICU "nurses' pet". The ICU patients are almost all either elderly or post-surgical, and typically stay for 1-2 days. I'm sure everyone gets great care there, but some combination of Rachel's youth, family, friends, sudden onset, prospects for recovery, ICU duration, etc. has touched the nursing staff. One of the day-shift nurses told me last week that she'd be "back tomorrow, but Cheryl [who's more senior] will probably pull rank and get Rachel". It's nice to be wanted.
• The key treatment question right now seems to be whether she's got epithelial ovarian cancer or germ cell carcinoma; it's still not known, and part of why the pathologist at U. of Chicago is being consulted. I'll leave you to do your own research; suffice it to say the chemo regimens are different, and there are some interesting possibilities with germ cell cancer (think "Lance Armstrong").

At home

• Lots of family visiting today -- the Wildwood Harrigans (Ed, Sharon, and kids), Grandpa up from Florida, Maura in from Naperville, the Valpo crew, and Rob back from Michigan. Along with Kathy and Sheila, of course.
• The St. A's back-to-school ice cream social was fun this afternoon. There's something energizing about the start of school, especially if you're not the one who will have homework soon.

Pat

More Awake

At the hospital

• Rachel's even more awake today. They took her off her Dilaudid drip, so her only painkiller/sedative is the Fentanyl patch. She didn't seem in pain at all today.
• She's still a little confused, I think, but aware enough that the nurse removed her soft wrist restraints. All day long she absent-mindedly touched the various lines, tubes, and tape, but didn't try to yank anything out. I know she's a lot more comfortable. And the confusion will diminish over time -- it will take a while to wash all of the painkillers out of her system.
• The kids all visited around 5pm -- Rach was in good spirits, but very tired.
• Otherwise, kind of a boring day.

At home

• Conor went to Isabelle Glavin's birthday party today at the Glenview pool -- there were a few other 5th grade boys there as well, so it wasn't totally, like, you know. Fi and Emmet tagged along.

Pat

Hand Gestures

In case you're wondering, I'm planning to update this every night while Rachel's in the ICU, but back off to 1-2 times per week once she's out. I'm planning/hoping to put the brakes on the emotional rollercoaster we're all on...

At the hospital

• Today was a good day. Labs are looking pretty good: Dialysis is doing its thing, bilirubin now under 2, WBC close to normal, etc. (Was it last night's meditation group?)
• Rachel was awake and fairly pain-free for most of the day, and more interactive than she's been for two weeks. Having the breathing tube out of her mouth helped greatly -- no bradycardia, she's more relaxed, we've backed off on her pain meds some, and she smiled quite a bit today. One of the residents who's seen her for 3 weeks now (Dr. Jen, from Infectious Diseases) stopped in to say goodbye, as this was the last day on her rotation. She was so overcome with emotion to see how well Rach is doing that she started crying and left the room for a minute.
  
• The kids came by today. I described the tracheostomy to them before going in; it sounded too gruesome to Conor, who chose to stay in the waiting room. I didn't push him. Rachel was very happy to see Fiona and Emmet.
  
• We're struggling to communicate right now, as Rachel's still a little loopy, can't talk yet, and strapped to the bed to keep her from pulling IV lines out. That leaves us trying to interpret her limited hand gestures and facial expressions. (They have an electronic alphabet tablet, but she can't work it yet.) Last night when Father Tom stopped by she was flapping one hand back and forth; we finally figured out that she was waving "Hello". I instructed her to wave her hand side-to-side to indicate "Hello". She responded with a hand gesture requiring only one finger, whose meaning was unmistakable. So she's gettin' a little feisty.

At home

• The Joneses (friends from our old Evanston dinner club, and now from Lake Geneva) visited this afternoon and later joined us for dinner. The kids all picked up right where they left off in July up north, which was fun.
• This is my weekly shout-out to Evan and to Aunt Kathy; every morning I go to the hospital knowing everything's taken care of on the home front. Thanks, guys.
  

Pat

The Bradycardia Bunch

At the hospital

• The pain med collection seems to be working pretty well. Rachel was awake and relatively pain-free for a decent part of the day, and was able to respond to multiple questions/requests (her previous limit was one). She's still pretty zonked on Dilaudid and Fentanyl, but this is a step forward.
• Dialysis today for 4 hours.
  
• The new complication is bradycardia, a slowing of her heartrate that's been occurring 1-3 times per hour for the last day. She'll be ticking along at 120, often while asleep, and then her heartrate will slow to about 40 for 5-10 seconds before recovering. This also causes her to get agitated, and her systolic BP will go from 70 up to 180-200 as her heartrate recovers. The cardiologist (technically "electrophysiologist") called in to consult was not terribly alarmed; he thought it was a reflex in response to some stimulus, possibly gagging on her ventilator tube. Tonight's tracheostomy may well solve this, but in the meantime it made today more exciting than I would have liked.
• Her oncologist stopped by late in the day. Apparently the immediate spread from ovary to brain is pretty rare, so a pathologist at the University of Chicago is being consulted regarding the primary tumor, and a different chemo regimen for Round 2 may be called for.

At home

• The kids came home from the Boylan sleepover before noon, and hung around here in the afternoon.
• Conor had fun at Sean Cox's birthday party later, and now is whining about not being allowed to go to the Cousineaus with Emmet. Fiona's punching buttons on her phone non-stop and making occasional snarky pre-teen comments. It's comforting to have things as close to normal as possible at home.
  

Pat

Another Quiet Day

General

• Thank you for all of the encouragement and support offered in the blog comments -- I read them every day. But if there's something you want to share with me privately instead of on the blog, my email address is PJHarrigan@yahoo.com.
• I also read Rachel her email each morning -- feel free to send her something at rachelharrigan1@yahoo.com.

At the hospital

• A generally good day. Restless this morning -- it looks like her belly filled back up in just 24 hours, so she was a little uncomfortable, but the new drug regimen appears to be helping. Lots of sleep this afternoon.
• Given how much Rachel's belly is compressing her lungs, there's no near-term plan to remove her from the ventilator -- and after 10-14 days they prefer to connect it via tracheostomy. This will be more comfortable, provide lower risk of infection, and prevent damage to her larynx. It's also reversible down the road, so I think I'm going to OK it.
• A consult from neurosurgery today. We'll just watch and wait for now, with another contrast CT in a few days.

At home

• Emmet got some quality time with his godmother Karen Mulroy this afternoon, and all the kids have a sleepover at the Boylans tonight.
• Aunt Kathy has a signed contract with Conor to complete more of his summer math packet tomorrow, but I'm sure he's working on loopholes.
  

Pat

A Quiet Day

At the hospital

• Paracentesis this morning -- 3 liters off, which appeared to give Rachel immediate relief as usual.
• No imaging, no dialysis, just rest -- for most of the day.

At home

• The boys played at Cousineaus in the morning, and finished their back-to-school shopping with Aunt Kathy in the afternoon.
• Fiona lazed around the house, practicing for her upcoming teenage years.

Pat

Her Feet Are OK

I wanted the title of this post to reflect some good news -- that's about all I could come up with, unfortunately.

At the hospital

• More struggles with pain vs. agitation vs. blood pressure. On good days in the past week she's been 85% resting, 15% agitated. Today was close to the reverse. Her ICU doc has added another pain med (Fentanyl patch) and an agitation medication (Haldol) to her regimen, to try to give her some relief.
• Dialysis today for about 6 hours.
• Elevated white blood cell count -- per her oncologist this is probably a result of infection, not a continued effect of the Neulasta drug.
  
• She got a CT scan this morning - head/chest/abdomen/pelvis, using contrast agent. A group of her doctors shared the results with me about 4pm, that group now including a neurologic oncologist and a social worker. Her head CT showed something in her cerebellum about the size of a grape -- it was just a smudge on her non-contrast head CT last Sunday (8/10), but pretty distinct this time. Most likely diagnosis: a tumor, metastasized from her ovarian cancer.
• There were also spots apparent in her liver, with the same likely diagnosis.
• The discussion was a little surreal. The doctors were very professional and supportive, but they did start to describe the main options going forward: continued aggressive approach, including potential brain surgery and radiation if she can tolerate it, vs. (direct quote) "letting her go". It was very clear that this is not an immediate decision, but they wanted to make sure I had started thinking about this. I had.
• The kids visited her just after. Rachel was at the right level of sedation (thank you, Nurse Cheryl), and it was all pretty good. We did have a brief continuation of the "Mom may not get better" talk we first had on 8/10.
  

At home

• Aunt Kathy took Fiona to the Barnes and Noble at Old Orchard tonight, at my urging. There is a reading/book signing by Danica McKellar (formerly "Winnie" on "The Wonder Years"), who went on from acting to get a degree in math from UCLA and to write a couple of books encouraging middle school girls to embrace math. I'm hoping to reconcile Fi's "I Hate Math" attitude with her high very aptitude -- maybe Danica's "Kiss My Math" book will help.

Pat

The Cancer Card

At the hospital

• A pretty uneventful day -- still tweaking the pain meds/sedation to find an optimal level. Some good rest, but several periods of pain/agitation. One hitch today is that when we were at what seemed like a good combo of Ativan/Dilaudid, her blood pressure dropped pretty low (67/27). Yet another part of the balancing act.
• A little bit of good news: when they do paracentesis they test the fluid removed for "cell count", and that has been decreasing since her chemo session last Sunday. That's a potential sign that the chemo's doing what it's supposed to (the cells in question are presumed to be malignant).

At home

• Fi went over to Clare Glavin's this afternoon for a little while.
• My brother Rob went home today -- it was a big help having him here.
• All the kids are spending the night at the Giellas.
• One thing I forgot to mention about yesterday's kid visit to the hospital: Conor got antsy after a few minutes in Rachel's room, and wanted to go back to the ICU lounge. I told him that was fine, but also that that was it -- he couldn't just come and go as he pleased. He said "Gee, Dad, that's a great way to treat a kid who's mom has cancer!" I made it pretty clear to him that playing the "Cancer Card" wasn't going to get him anywhere with me. As we go forward I'm hoping it doesn't get him anwhere with any of you, either -- I'm pretty sure that's not in his best interest. (I'd be surprised to hear this from Fiona or Emmet.)

Pat

The New Normal

At the hospital

• No real news yet again -- I got there just after 6am, as usual, and got the doctors' reports as they cycled through. Rachel was pretty comfortable most of the day, with some periods of pain. They did dialysis for a while, and her numbers look pretty good. The nurses know how best to position and take care of her to minimize pain. Bottom line: she's holding her own, while we hope that the chemo is working. It occurred to me that this is the "new normal" -- it would have seemed pretty awful two weeks ago, but for now holding steady is far better than going downhill.
• The kids visited this afternoon; the boys got quickly bored in her room, but I'm glad they wanted to go.
• Rachel was resting comfortably when Sheila and I left.

I'll end this tough week with a tender thought, reinforcing what great care Rachel's getting. Her PCT (Patient Care Technician, aka Nurse's Aide) has primarily been Dell, a 50-something Jamaican woman whose speech has a wonderful accent and rythym. Her job includes a lot of medical stuff, I'm sure, but she spends at least 5 minutes each morning stroking Rachel's hand or hair, talking directly and kindly to her. Say this in your mind with that accent, to get a feel for it:

• "This is Dell, here, Rachel. I was thinking 'bout you yesterday on my day off. I was thinking but I wasn't worried, 'cause the Good Lord told me he was lookin' out for you. I was thinking 'bout you when I said my Our Father and my Psalm 13 this morning. You got to rest now and get strong! That machine's takin' those poisons out of you, and then you'll feel so fine! You've got to get better for beautiful Fiona, and those boys, and everyone. You rest now, Baby Girl, and I'll be back to see you in a little while..." etc.

So for those of you who feel bad about not being able to visit, don't worry -- Dell's telling her how we all feel.

Pat

A Better Day

Briefly:

At the hospital

• The nurses seem to have found the right combination of pain meds, bed positioning, and NG tube care to keep Rachel reasonably comfortable. These latter two seem pretty important - with her belly still distended somehow the bed tilt, pillows, etc. make a big difference, and any amount of bile accumulation in her stomach is apparently really painful. She slept 90% of the time, so all in all, a better day.
• Lab results as expected -- yesterday's dialysis worked pretty well. They did dialysis again today to take some fluid off.

At home

• Fi hung out with some friends, and the boys went to the pool with the Finamores. Rob (the brother-in-law) went back to Michigan, so we're down to just one Rob. If anyone has a spare, let me know.

What I haven't said in a few days, but is often on my mind: Thanks again, everyone, for your thoughts, prayers, and support.

Pat

Pain Relief

Generally in writing this I err on the side of disclosure, good and bad. I figure most everyone can handle it, and it's better to share the truth than to just say "everything's OK". That being said...

At the hospital

• Today was an OK day on paper, but a bad day if you have ovarian cancer. Rachel's labs looked OK after her dialysis yesterday, and she got dialysis again today. There was no bad news on the infection front, or her chest X-ray, or any other tests.
• The weaning from sedation/pain meds isn't working: her only two modes today were "unconscious" and "apparent agony". I don't use that word lightly -- when she was awake her face was beet-red and contorted, she squirmed in her bed, gripped her bedrails (or a visitor's hand) tightly, and bit down so hard on her ventilator tubing that the pressure alarm went off on the machine. The staff is no more immune to this than you or I would be; they put her back on the continuous sedative (Ativan), and upped her pain med (also switching back to Dilaudid from morphine). The physical benefits of coming off of sedation are heavily outweighed right now by the need for pain relief. She was resting when I left this evening.

At home

• The kids picked up pet supplies with Aunt Kathy today, including a new fish tank. They'll populate it this weekend once it's equilibrated -- Conor has an interest in some expensive fish, but he's going to learn about the "Abe Lincoln" limit.
• Emmet went with his friend Lanie and her family tonight to Cirque du Soleil. The rest of us are watching even more Olympics.

Pat

More Maintaining

A nice quiet day. Even on a boring day I'll still try to do a quick post; but if I don't get one done please don't assume the worst...

At the hospital

• Rachel's still slowly coming out of sedation. Today she opened her eyes a few times when asked, and gave more nods and head shakes to questions. Note: That sounds bad, like it might be neurological, but I've been reassured that it's just sedation/pain meds.
• Her dialysis didn't work last night -- plugged catheter. They fixed it and started this morning, and it worked from 9am to about 4pm. Hopefully her labs tomorrow will reflect this; there's probably more dialysis in her near future.
• Father Tom stopped by, as he has every day. Ditto for Sheila (Rachel's niece).
• The kids visited late this afternoon. This went well: they weren't freaked out by the ventilator or Rachel's state, and they talked to her for a while. Fiona (Miss Perceptive) said as we left, though, "I hate the way all the doctors and people looked at us like 'Oh, those poor kids...'" I'm sure she doesn't want any special treatment or attention when school starts, and just wants to blend back in.

At home

• A pool trip in the afternoon (prior to the hospital visit) with the Giellas.
• The Robs (my brother and Rachel's brother-in-law) are doing some great house project stuff; today it was the basement and the garage.

Pat

Maintaining

At the hospital:

• Rachel now has urinary and lung infections and a resulting fever/elevated WBC, so she's been moved to a stronger antibiotic regimen. To prevent spreading infection through the hospital we now have to gown up to go in her room.
• Due to her poor kidney performance she had to go on dialysis today. A venous catheter was inserted above her collarbone, and she started dialysis around 5pm.
• She's off of the continuous painkiller/sedative combo, and is getting those via injection every 4 hours. This is meant to keep her from being over-sedated, the downside being it will take some tweaking to keep her out of periodic pain. The upside is she was briefly conscious this afternoon, and responded to some questions with nods.
• Otherwise stable, so somehow that was a good day...

At home:

• The boys went to the beach with the Finamores today, and Fi hung out with her chums Maddie, Fiona, and Clare.
• Rachel's sister Cathy is whipping the house in shape, her husband Rob and my brother Rob are getting some projects done here, and Evan's organizing all of you volunteers. I feel a little like George Bailey at the end of "It's a Wonderful Life". Minus the eggnog.

Pat

A Quiet Night and Day, Thankfully

At the hospital

• By last evening they got Rachel to a pretty good steady state (heart rate, BP, breathing), and she has pretty much stayed there since.
• She's off of the Ativan, and they reduced the morphine, to try to bring her to a more wakeful state. She's stirring more, but not really responsive. The concern with trying too hard to wake her is having her experience a lot of pain, so they'll proceed cautiously.
• Her ICU doc today was a little less willing to associate the liver/kidney issues with the spread of cancer -- there are a lot of possible causes to what's been observed. I understand why they don't like to speculate, as I hang on and interpret everything they say.
• When will we know if the chemo is working? It depends, of course, but I'm told 1-2 weeks is a reasonable expectation. One indicator will be the rate of accumulation of fluid in her abdomen.
• They're removing more belly fluid right now. I'm not sure if I prefer the medical term, paracentesis, or their nickname for it, "tapping".
• No other significant news.

At home

• The kids spent the night and day at the Finamores, and they're home now. Rachel's sister Kathy is going to stay with us for a while and help watch them, although they'll get their share of playdates for the next couple of weeks, I think.

Pat

Grave Condition

This is as bad as it gets. Somehow I find updating all of you to be therapeutic; maybe it’s knowing how many people care about Rachel, that the one thing I can do is keep everyone informed. I sure don’t seem able to do anything about the cancer.

At the hospital: Grave condition

• Rachel really took a turn for the worse last night/this morning.
• Her bilirubin went up to 11, and only came down to 7; there are a number of possible causes, but the most likely at this point is that the cancer has spread to her liver.
• Her urine output dropped to nothing, indicating kidney failure. Again, a number of possible causes, with spread of cancer to the kidneys being a key possibility.
• Her belly filled back up with fluid -- they drained another ¾ gallon this morning.
• And her breathing became very labored, so they put her on a ventilator.
• All told, this is what they call “multi-organ system failure”, which is as bad as it sounds.
• Everyone is in shock at how quickly this has progressed; she just checked in and was diagnosed 8 days ago. I felt a little morbid about researching 5-year survival rates for ovarian cancer earlier, and now 5 years seems like an eternity.
• They started chemo this afternoon, with the one hope being that attacking the tumors will allow her organs to rally.
• Rachel’s family is here with me, which is very helpful.
• Father Tom came by this afternoon, and was a great comfort. He also gave Rachel last rites (Anointing of the Sick).
• Now we wait and hope -- there’s still hope, although I’m starting to make my peace with this.

At home

• Many of Rachel’s friends joined us at 8am Mass today, and we had a small prayer session afterward. We blessed a blanket that I then brought to the hospital, and it’s now keeping her feet warm.
• I brought the kids to the hospital this morning, just before Rachel went on the ventilator. She saw and acknowledged them, and squeezed their hands.
• The kids are now at the Finamores, and doing OK. I stopped by this afternoon to give them the update -- trying to balance preparing them for what’s probably coming (Mom’s not coming home) against what an 8, 10, or 12 year old should have to hear. Today was as clear as I’ve been with them, but it still doesn’t seem to register -- maybe denial is their defense mechanism for now. I’m a little envious.
• One other note: so many of you have offered to help that it’s overwhelming. I believe Evan Finamore is going to coordinate this for us, unless the gang decided otherwise this morning. You can reach her at e_cfinamore@email.msn.com, or 847-563-8554, or 847-217-2117.

Thanks yet again for all of your thoughts, prayers, and support. We’re going to need even more going forward.

Pat

Some Ups and Downs

At the hospital: Some ups and downs

• Rachel’s still pretty groggy, even though they’ve backed her pain med down quite a bit. We’re watching the Olympics, of course, but dozing on and off.
• Her fever is down, as she’s on a broad mix of antibiotics (including vancomycin).
• She was anemic yesterday evening, so they gave her two more units of blood.
• Her bilirubin was elevated to 5, and the other liver enzymes were up a little. She’s a little jaundiced as a result. (This is alarming me more than it is her doctors.)
• The chest x-ray today looked similar to yesterday -- no better, no worse.
• They gave her a beta-blocker to try to bring her heart rate down, but it’s still hanging in the low 130’s.
• Food is still a no-no, but her fluid balance is now good enough to allow IV nutrition to start tonight. That should help her energy level as well.
• She’s been out of bed a couple of times today. They wanted her to walk around a little, but we settled for standing for a few minutes and then sitting up in a chair for 30 min.
• She’s going to be in the ICU at least another day. And rather than wait 3-4 weeks for chemo they’re going to start next week, if it looks like Rach can tolerate it.

At home:

• Conor and Emmet are at the Finamores today, and probably going for a bike ride later.
• Fiona is going to hang with Maddy G., both of whom are a little tired from Emily Boylan’s sleepover birthday party last night (go figure).
• I’m going to bring the kids here for a visit tomorrow. The ICU rule is only immediate family members over 12, but the nurse said we could sneak them in for a quick hello. (A week is longer than they’ve ever gone without seeing her.)

Pat

Recovery Day

At the hospital: Recovery

• Rachel’s resting reasonably peacefully. One challenge is getting the right pain medication level; when asked the “scale of 1 to 10” pain question she usually says 8 or 9, so she’s on a lot of Dilaudid. This is making her groggy, but I think they’ll settle for that for a short while. She also dozes off briefly and then talks in her semi-sleep when she wakes up, making for some funny discussions…
• She’s running a fever (101-102), which isn’t helping. They’re checking for a possible infection (she has a slightly elevated white blood cell count), but apparently a post-op fever is not unusual. And her heartrate had gotten down in the low 120's, but it's back up in the low 130's.
• I haven’t mentioned it yet, but I think Rachel’s getting tremendous care here. That’s especially true in ICU, where the nurses seem really on the ball and proactive.
• She's going to spend another day in ICU, hopefully going up to the regular floor on Saturday.
• No pathology news.

At home: Super Splashdown

• Conor had a blast at the Jack Lydon / Jackson Finamore Super Splashdown last night, and then spent the night at the Cousineaus.
• All three kids are with the Giellas now -- I’m going to bring them home tonight.

Pat

Update from the hospital - Rachel’s OK

· Her surgeon cautioned us first-thing this morning that she was a high-risk candidate for surgery, due to her elevated heart rate (~130) and her out-of-whack electrolytes. But the two teams of doctors both recommended proceeding, with the risk of not doing surgery being greater. We agreed.
· She was in for about 3 hours.
· Debrief from her surgeon:
o Rach was not especially stable during the surgery, so they had to get the main stuff done and get done. She did have to get a transfusion, and will need another.
o They removed her tumor, her right ovary (“the size of a cantaloupe”), and her left ovary.
o They removed some additional smaller tumors from her lower abdomen.
o They held off on the additional small tumors in her upper abdomen, as well as a hysterectomy, in the interest of time.
o They were able to extubate her, so she’s breathing on her own.
o She’s in Recovery right now; she’ll be in the ICU for at least a day. Duration of future hospital stay TBD.
o The preliminary diagnosis is ovarian cancer, but that’s still tentative until they do the workup of the tumor.
· The plan at this point is to recover from this acute illness, do chemo, and possibly do another surgery later to remove additional tumors. This is highly dependent on how she responds to chemo.

Thanks, everyone, for all of your thoughts, prayers, and support. We’ll need more…

Pat

Wednesday 8/6

A pretty busy day today. Lots of information, but not everything we were looking for.

At the hospital

• Rachel’s belly had filled back up with fluid, so they did another drainage procedure -- another gallon. She feels a lot better.
• She’s not been allowed to eat anything, and not really drink anything either (she gets some ice chips). She’s thirsty. Pain medicine is still working alright.
• They put in a “central line” to enable IV nutrition, but that won’t begin until after surgery.
• Preliminary results from the lung biopsy are negative for malignancy -- emphasis on preliminary. Very good news, potentially.
• They still don’t know exactly where the abdominal tumor is from, or what else is happening in the abdomen. But we have a plan for tomorrow:

o Surgery at 8:30am. Laparoscopic removal of the tumor, and exploration of the abdominal cavity.
o If the tumor looks like it’s GI-related, stop & sew up. Chemo would then precede any additional surgery.
o If the tumor looks ovarian and hasn’t spread or isn’t complicated, stop & sew up. Chemo would follow starting in a few weeks.
o If the tumor looks ovarian and has spread, remove any additional tumors >1cm, and remove ovaries, uterus, etc. Chemo would follow starting in a few weeks.

• In-hospital recovery will be at least 3-4 days. It could be longer, depending on pain control needs, ability to eat, labs, etc.
  

At home

• Rachel’s Mom and two of her sisters (Rosanne and Marilyn) came into town today, and will stay through tomorrow’s surgery. For you Evanston people, feel free to stop by the house and say hello.
• The kids are having fun up North, and we’ll call them tonight to check in.

Communication

• Rachel’s thinking that visitors will be welcome here starting Saturday. (She said Sunday, but I’ll work on her.)
• Note that she is checking her email on her cell phone; feel free to drop her a note at rachelharrigan1@yahoo.com, but don’t expect a response.
• I’m sure I should have more people on this distribution list, so you can help me now. I’ve copied all of these update notes to a blog, so please pass on this address to anyone you think should be kept up to date: http://rachiereport.blogspot.com. Thanks.

Big day tomorrow -- thanks for all the notes, thoughts, and prayers.

Pat

Tuesday 8/5

At the hospital - a pretty eventful day:

• Rach finds it too painful to lie flat even briefly, so lying flat for 2 hrs. for the bone scan wasn't going to work -- it's postponed for now.
• The initial pathology work indicates the abdominal mass is malignant, as expected. They're still not sure if it's from the ovary, the colon, or something else -- they should know tomorrow.
• The level of concern for the lung mass is increased, so they did a biopsy of that this afternoon.
• The doctors think it's best to do surgery right away -- probably Wednesday or Thursday.
• Rachel's pain medication (IV/PCA Dilaudid) has been increased, so she's more comfortable. Some of the fluid buildup is returning, but it's not yet as bad as before.
• She's in pretty good spirits -- we watched some TV tonight. (Note that "House" makes every other doctor you meet seem like a saint...)
  

At home, pretty quiet:

• The kids were at the Cousineaus for the morning, and left in the afternoon for a couple of days at Lake Geneva with the Giellas. They're handling this pretty well, although Emmet called the hospital this evening (crying) because he misses his Mom. I'll take them for a visit on the day they come back (Thursday or Friday).
  

Pat

Monday 8/4

At the hospital

• Today was a pretty boring, uncomfortable day. The buildup of abdominal fluid caused some breathing difficulty, so Rachel's on oxygen, and not able to talk much without resting.
• In the late afternoon she went down to Interventional Radiology, where they sampled and drained the abdominal fluid (almost a gallon) and did the biopsy of the ovarian mass. Results in 1-2 days.
• She was feeling a lot better after this, but tired.
• Tomorrow morning she'll get the bone scan, to look for possible causes of the original rib/chest pain.
  

At home

• The kids had fun at the Finamores all day. I brought them home for dinner (thanks, Evan!), and we were joined by Fiona McMahon, who's sleeping over.
• Change in plans for this week: Cathy Giella is going to pick them up tomorrow afternoon and take them up to Lake Geneva, coming back either Thursday or Friday. That will make it really easy for me for these next critical days. So we're good for dinners for a few days -- how about:
  Thursday: Jane Berkley
  Friday: Laura Boylan

Thanks, everyone, for all your kind deeds and wishes. We feel blessed.

Pat

Sunday August 3rd - First Post

I've talked to most (but not all) of you -- my apologies if this is first-time news, but I'm hoping it's not. It's been a hard 36 hours.

What we know:

1. About 4 weeks ago Rachel started having pain in her chest (ribs), later radiating to her back. Her doctor thought it was a pulled muscle, and prescribed painkillers.

2. It got progressively worse, but she tried to tough it out during our Wisconsin vacation. The painkillers weren't working, she wasn't sleeping, and she was in constant pain. We wound up making 2 trips to the emergency room up North, where the condition was diagnosed as costochondritis (inflammation of the connective tissue in the ribs/chest). With a return visit to her doctor in Evanston an oral steriod antiinflammatory was added to her regimen. Also a CT scan showed pneumonia, so she started an antibiotic as well.

3. A week ago she started having digestive problems, which we thought were related to her medications -- constipation, some nausea, later diarhhea. Still lots of pain, now mainly in her lower abdomen, which also got pretty distended.

4. Yesterday morning (Saturday) she was so miserable she drove back from Lake Geneva to Evanston Hospital, where (after lots of tests and imaging) they found a fist-sized mass near her ovary. They admitted her to the hospital, and got her pain fairly well under control with IV pain meds.

5. A CT scan today confirmed the pneumonia is still present, and there appears to me a small mass in her lung as well.

6. She's scheduled for a biopsy tomorrow, and a bone scan to see if they can determine the source of her original pain.


What we don't know:

1. We don't know if it's a tumor, an abcess, a cyst, or something else. The oncologist we talked to today said it's probably a tumor based on what they've seen, but we shouldn't jump to that conclusion.

2. We don't know if it's benign or malignant.

3. We don't know if it has spread.

The biopsy should give us this info, probably by Wednesday. She'll have surgery once there's a diagnosis, and then the right follow-on treatment (i.e. chemo if needed).


What you can do for us:

1. Don't panic, or assume the worst. We're not.

2. Don't visit -- yet. Rachel wants to have a firmer idea whats going on first, at least for a day or two.

3. Many of you have offered dinners and/or kid care while we sort this out -- I'm overwhelmed by your generosity. I'll be able to take time off as needed this week, and going forward, but your help is really welcome. Let's do this for this week:
Monday: Dinner from Evan Finamore
Tuesday: Dinner from Leslie Cousineau, maybe some kid-watching
Wednesday: Dinner from Jane Berkley
Thursday: Dinner from Laura Boylan, maybe some kid-watching

After that we'll play it by ear.

4. Please use your best judgement in sharing this information -- I'm sure I've forgotten someone I should be sending this to, but we'd rather wait to tell the whole world once we know better what's going on. I'll keep you posted.

5. Keep us in your thoughts and prayers.

Pat