Paracentesis Round Two, Plus More Frustration

Hi everyone:

Yesterday afternoon, Kathleen went through a second round of paracentesis to remove the fluid from her abdominal region. This time, things went much more smoothly and with far less discomfort. I was able to sit in the room as the procedure was taking place. The doctor showed us, on ultrasound, most of Kathleen's major organs. All were completely surrounded with fluid. When the doctor pointed out Kathleen's spleen, she said, "It looks bigger than I would have thought." The doctor replied, "It's a lot bigger than it's supposed to be."

In total, another 1.95 liters of fluid, which looks a lot like dark apple juice, was removed. One of the techs in the room said that fluid of that color typically means the liver is in some way compromised. This fluid, like the fluid from her last procedure, was sent out for analysis.

Here's the sucky part: almost all of the fluid is back this morning.

We're hoping to hear back about the analysis/cytology of the fluid from the first paracentesis procedure today. As soon as I know something, I'll share it here.

As you might imagine, Kathleen is pretty frustrated with being in the hospital.

Love,
Brian

Some recent photos (part II)

Hi everyone:

Here are some photos we snapped tonight. Kathleen thought that some who hadn't been to the hospital in the past day or two might want to get a sense of just how much fluid she's been retaining on her abdomen. Patty said, "Anyone who wondered what Kathleen looked like when she was pregnant...here you go!" One of the things I love about both Kathleen and Patty is their ability to find some dark humor in what are less-than-ideal circumstances.

Some recent photos (part I)

Hi everyone:

I'm posting two sets of photos tonight. The first set (below) includes pics from Kathleen's visit to our home a few days before her re-admission to the hospital. Although she was weak, we caught her during a short burst of energy and snapped some shots. I even got her up for a short dance.

Still hanging on to that fluid

Hi everyone:

Kathleen is still retaining a ton of fluid in her midsection, and is also puffy through her feet and ankles. She's been given diuretics, which are making her pee like a racehorse; still, the distension of her stomach doesn't seem to have been relieved much as yet. Our understanding is that she'll go through another round of paracentesis tomorrow, in hopes of providing some relief. This time around, though, she's going to agree to the treatment only if she's given appropriate sedation first. Before leaving tonight, Patty gave me stern directions that I'd better play the "heavy" on Kathleen's behalf if anyone suggests the sedation won't be part of things.

Kathleen's aunts Sue and Joan visited yesterday, which gave Kathleen an emotional lift. Today, she had hubby Don, her brother Kevin, sister MaryBeth, Patty, me and our son Connor keeping her company. She had a nice conversation with her son Sean tonight, which really seemed to perk her up. All in all, she seemed in pretty good spirits today, which was nice to see.

More (including some photos) soon...

Love,
Brian

More...

Hi everyone:

The doctor just stopped in. Patty said that he told them that there's so much fluid that has built up in Kathleen's system they can't remove it all safely, and that it's encroaching on her heart and lungs. That's all I know for now.

Love,
Brian

Arrggghh!!!

Hi everyone:

Just spoke to Patty. She said that it looks like most or all of the fluid removed from Kathleen's abdomen last night has been replaced with new fluid by this morning. I wish we could understand what this means. What we've researched seems very unsettling...but we're not doctors, so we'll wait to hear what they have to say. Stay tuned...

Love,
Brian

A miserable evening

Hi everyone:

Kathleen had a miserable early evening last night. The paracentesis procedure, during which five pounds (2 liters) of fluid were removed from her abdomen, was painful and traumatizing. Most of her immediate family stayed with her through the evening, then Patty spent the night with her. We're eagerly awaiting the results from the analysis of the removed fluid; hopefully, we'll hear some answers that can prevent a recurrence. I'll post more after I get to the hospital later today.

Love,
Brian

A bit of a mystery

Hi everyone:

Joe spent last night with Kathleen, and I've been spending the day with her. She's been feeling pretty miserable, in large part because of the distension of her stomach.

The CT scan results showed no visible cancer in that region, although Kathleen's oncologist noted that there was a significant volume of fluid trapped in her abdomen (not in the stomach itself, but in all the surrounding tissues and cavities).

The medical staff has been scrambling today to drive up her platelet levels so that they can safely do an ultrasound-guided paracentesis, which I just heard is going ahead. In essence, this involves numbing her abdomen and then inserting a long needle that drains the fluid. The fluid is then sent to the lab for analysis, including a check for infection or floating cancer cells.

I need to sign off because things are getting hectic here; I'll provide another update when I can.

Love,
Brian

Morning...yawn!

Hi everyone:

Kathleen didn't enjoy an especially restful evening, in part because they kept coming in to check vitals, switch out I.V. bags and turn off the alarm on the I.V. pump--which, at 4 a.m., seems louder than a Metallica concert. What's more, because her platelets are so low, and a fall or other injury could quickly become serious, she now has a bed alarm; if she moves off the bed, or even shifts too much on the bed, the sound is deafening (this at any hour).

Her oncologist stopped in this morning. He has arranged a battery of tests for Kathleen today, including visits from an infectious disease specialist, a gastroenterologist and, most likely, a cardiologist. Of particular concern to the doctor was Kathleen's distended stomach, which she finds very uncomfortable; it actually looks at this moment like she's a few months pregnant. She'll be heading down shortly for a CT scan of her torso, and will later have an echocardiogram.

I discussed pain management issues with the doctor, because the nurses are sometimes hesitant to give Kathleen her pain meds on time because of her low blood pressure; they refuse even though Kathleen's BP almost always runs low. The doctor has said he will address this concern so that, hopefully, it won't be an issue tonight.

We're still waiting for her updated blood results. As we learn more through the day, I'll try to post additional updates. She's a trooper, to be sure, but I can tell she's frustrated by what seems like one thing after another.

Love,
Brian

P.S. As I was writing "one thing after another" (above), Kathleen started vomiting. Geez.

Rough day...back in hospital tonight

Hi everyone:

When Patty and I visited Kathleen at home tonight, we were alarmed by how pale, warm and uncomfortable she seemed. She was complaining of fatigue, soreness, nausea and pain, and had a frequent cough and raspy breathing. She was having difficulty moving even a few feet, and seemed to be struggling with concentration. In short, she looked terrible, and had been feeling quite rough for more than 24 hours.

Patty called the oncologist's service, who recommended that Kathleen come to the E.R. as a precaution. At the E.R., blood tests revealed that Kathleen's platelets and other blood markers (with the exception of white cells) were quite low, and she did have a low-grade fever, so her doctor admitted her to the hospital. In the E.R., a number of tests were performed, and I.V. antibiotics were ordered as a precaution (the worry being that the low-grade fever might be suggestive of some sort of infection, perhaps from her port site). Patty headed home (reluctantly) around 12:45am...I'm staying the night.

Tonight (actually, I guess it's this morning), she is receiving immunoglobulin, followed by platelets and then whole blood. As I write this, she's sleeping and appears to be comfortable. I'll try to write again later to provide an update once we know any more. We don't know if this will be a brief or extended stay; we did know she wasn't faring well when we started the evening. Hopefully, she'll bounce at least some of the way back and be out of here soon.

Love,
Brian

Some recent photos

Hi everyone:

I was able to snap a few shots of Kathleen during her recent hospital stay. Here they are:

Busted...dipping into the snack stash.

With one of her favorite nurses.

Feeling a little groggy.

Home again

Hi everyone:

After receiving several rounds of chemo, platelets, whole blood and plasma, Kathleen was finally given the blessing to leave the hospital last night. She needs to see her oncologist on Tuesday, and will have to give samples of her blood twice a week to see if any progress is being made on her blood counts and platelets. Patty received blood test results throughout Kathleen's hospital stay; based on what we saw, little or no improvement was being made, although this could change as her body recovers from the effects of the chemo.

As of last night, she seemed to be tolerating the chemo fairly well, although it was causing her some stomach discomfort. I think the joy of being out of the hospital trumped any other considerations.

I'll provide updates whenever we know more.

Love,
Brian

You'd better sit down for this one

Hi everyone:

Kathleen's oncologist visited just moments ago. She may not receive her chemo until tomorrow, but get this: if all goes well, she'll be released from the hospital tomorrow or Sunday!

She'll need 24-hour-a-day care, and will need blood tests (and, probably, transfusions) twice a week.

Please send all of your good vibes this way so we can get her out of this place (as hospitals go, it's not bad, but the cheeseburgers in the cafeteria suck).

High fives all around this room right now!!!

Love,
Brian

Surgery...done

Hi everyone:

Not much to report, other than to say that, based on what I've heard thus far, Kathleen's surgery (to implant a port for chemo) went smoothly and she's recovering in her hospital room. Chemo will likely start tomorrow. If I hear more, I'll share more here. Patty is staying with Kathleen again tonight. Don and Sean are going to watch the Cubs lose tomorrow (sorry, I couldn't resist).

Love,
Brian

On to chemo...

Hi everyone:

Kathleen's stats continue to show few signs of rebounding, although doctors are giving her both whole blood and platelets before and after her port placement surgery this afternoon. If all goes well, she will receive a chemo cocktail of Taxol and Carboplatin starting tomorrow. The side effects from these drugs don't sound fun.

Patty and I both stayed with Kathleen last night. This morning, Denise brought Kathleen an ENORMOUS stuffed bear...it's not much smaller than Kathleen.

I'll try to provide an update after her surgery this afternoon...along with some photos we snapped last night and today.

Love,
Brian

Blood battles

Hi everyone:

Kathleen's battles with her blood continue. She received two units of whole blood overnight Monday. Her platelet and hemoglobin levels increased somewhat when measured yesterday, but have dropped again by this morning. The inability to make these levels climb and stay up remains a troubling concern.

A surgeon will be visiting her sometime today to discuss/schedule the insertion of a port in her chest for the administration of chemo. Before that procedure, she will need a platelet transfusion, which will hopefully boost her platelet levels enough to make the surgery possible and safe. If all goes according to plan, she should have the port inserted and start chemo within the next day or so.

Patty stayed with Kathleen Monday night, and her good friend Cindy stayed with her last night; I may stay with her tonight or tomorrow night. Having someone with Kathleen has proved to be important, because the hospital hasn't been entirely consistent about making sure they stay on top of her pain medication. When Kathleen is at her best, she's like a somewhat weakened version of the Kathleen we all know so well--for example, Neil, Patty and I watched the flick Zathura with her yesterday afternoon and had a great time. She also has her rough moments, though, mostly with getting comfortable in bed, with pain and with sudden bouts of nausea.

In spite of all this, she's been pretty funny at times. We brought her Brown's Chicken yesterday because she was craving it (steroids tend to give one a ravenous appetite), and Kathleen was complaining that eating so much was going to make her fat. We laughed, because she's now in XS pajamas and must weigh about as much as a bigger housecat. Yesterday afternoon, she said to me, "Okay, Brian, we're starting a 'When's Kathleen going to lose all her hair again' pool. What's your guess?" I asked her how long it took last time, and she said, "After the second round of chemo." I said, "Okay, I'll take that."

Kathleen is handling all of this remarkably well. She's a tough cookie. If anyone can defy the odds and turn this around, I believe she can do it. But the next few days are not going to be a picnic. Please keep the positive thoughts and prayers heading her way.

Love,
Brian

Back in the hospital

Hi everyone:

Patty joined Kathleen and Don at Kathleen's oncologist appointment this afternoon. Following the meeting with the doctor, Kathleen is being re-admitted to the hospital, because her platelet and blood count levels have taken another sharp decline. Her doctor believes her damaged spleen is causing an autoimmune response that is attacking platelets. This would explain why Kathleen has been feeling very weak in recent days. Patty and Don are taking Kathleen to the hospital as I write this (4:00pm CT).

The plan, I believe, is to give Kathleen more rounds of blood and platelet transfusions, as well as high doses of steroids to counter the effect of the autoimmune activity. Depending on how that goes, the next course of action would be to install a port through which chemo drugs could be administered. The doctor is hopeful a round of chemo will balance things out and help Kathleen function more effectively. Patty asked the doctor if there were risks associated with using chemo when Kathleen was so weak; the doctor said that was a factor, but felt the risk of NOT using chemo would be greater.

I'll try to post an update later this evening or tomorrow.

Love,
Brian

Just a minor update

Hi everyone:

Patty and I joined Kathleen yesterday as she had her blood drawn and tested and underwent a CT scan of her chest. Her blood results were encouraging enough (e.g., no major drop) that doctors are holding off on having her undergo more blood transfusions for now. It's not great news, but I think we can call this good news, no?

No results have come back as yet from the CT scan. As soon as Kathleen hears anything, I'll share it here.

Kathleen stayed over with us last night, and will be visiting with her cousin Ellen this afternoon. She had a bit of a rough morning, but seems in decent shape and spirit as I write this.

Love,
Brian

Four musketeers

Hi everyone:

Last night, Kathleen joined our family for a belated birthday dinner. Neil arrived for some socializing later in the evening. The "four musketeers" (as Kathleen calls us) gathered on the stairs for a group photo. Of course, and as always, we were goofing off.

Out of the hospital

Hi everyone:

Kathleen was released from the hospital this afternoon. Her platelets are continuing to drop, in spite of transfusions of both whole blood and platelets. Doctors aren't willing to attempt a endoscopy or colonoscopy with her counts so low, because even the slightest amount of bleeding could be problematic. The CT scan revealed that Kathleen's spleen has been compromised by a cancer-related event and is, in essence, "eating" platelets.

Later this week, Kathleen will undergo another scan, this time of her chest, and another round of blood transfusions. They will also be reviewing a recent X-ray of her hip. The next possible course of action would involve chemotherapy, a prospect that Kathleen does not relish. After a discussion with her doctor, the plan is to adopt a "wait and see" outlook before starting chemo.

Kathleen is joining our family this evening for Patty's belated birthday dinner. The news here doesn't seem great, but at least she's not sitting in a hospital bed.

Love,
Brian

Delays, delays

Hi everyone:

Kathleen's scheduled upper GI and colonoscopy were postponed to Monday because her platelets took another dive, which increased the risk she could have a dangerous bleeding situation. So, instead of these tests, Kathleen received a bag of platelets that looked suspiciously like a family-sized bag of honey. Later, she'll be receiving another round of blood transfusions. Question: Does this make her a vampire?

I walked down with Kathleen this afternoon while she went for a CT scan. We're hoping to hear the results today, although we may have to wait until tomorrow.

More soon...

Love,
Brian

Sticking around

Hi everyone:

Kathleen will be held captive in the hospital for at least another day. Because of stomach issues she's been experiencing, doctors have scheduled an upper GI and colonoscopy tomorrow. The gastroenterologist who stopped in expressed concern about Kathleen's very low blood counts (less than half the normal level) and elevated bilirubin (which would account for her yellow skin tone).

The doctor showed some surprise that her blood levels were so low without her losing any through external bleeding. He posited that two things may be happening: that the cancer in her bone marrow has become even more aggressive, and that her liver may not be functioning properly. Needless to say, this is somewhat unsettling news.

On the plus side, Kathleen seems pretty strong today, and her color is much better than yesterday, so it would seem the blood transfusions were the right call. Moments ago, she did a little walking tour of the hospital floor. We're waiting for her oncologist to visit, at which time we hope to have more details about her condition and planned course of treatment.

I'll post more as we know more.

Love,
Brian

P.S. During our walk, we were talking about the strengths and weaknesses of various hospitals. Patty mentioned something about Edward Hospital. In response, Kathleen blurted out, "I don't like Christ." I'm pretty sure she was talking about Christ Hospital.

In-hospital tests

Hi everyone:

For the past couple of weeks, Kathleen has been experiencing dizziness upon standing, stomach pain, sporadic nosebleeds and overall malaise. In the times I saw Kathleen, I noticed her skin tone had a yellow hue and her legs and feet were almost white. More than anything, though, Kathleen seemed to be distressed by her discomfort, which was unusual, because she rarely complains about how she's feeling. Patty and I have really been worrying about her.

When Kathleen visited her doctor today, he was alarmed by her overall blood count and her appearance, and admitted her to the hospital. As I write this, she's in the process of receiving her second of three blood transfusions. Tomorrow, she'll be run through a series of tests to try to get to the bottom of why she's been feeling so poorly. I think she's hoping to escape the hospital tomorrow; keep your fingers crossed.

When we left tonight (super-protective sister Patty willing to do so only at Kathleen's urging), Kathleen was tired and ready to sleep. After the first infusion, Kathleen's color did seem somewhat improved. Let's hope this is just a minor setback.

I'll post more as soon as we know it.

Love,
Brian