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