Wow...a retraction...on a personal blog!

Hi everyone:

Well, I guess I somehow misinterpreted some of the numbers from the past week--which became clear to me when Kathleen said, subtly, "That's all wrong, just so you know." So please allow me to clarify and update, based on the numbers we received today:

• Kathleen's hemoglobin currently sits at 8.6, down from 8.7 on the 18th and 9.0 on the 16th. The difference between and 8.7 and 8.6 doesn't seem that significant, especially when we've grown accustomed to much larger drops. Herein lies the confusion: somehow, I completely missed the 9.0 measure on the 16th, from which the drop seems more meaningful. We'd certainly like the numbers to be heading in the different direction, but at least they're not dropping like stones, and perhaps they'll soon respond to chemo, as have the platelets. So, for any confusion I may have created...oops, sorry.
• Kathleen's platelets are at 24 right now, a slight bump from 23 on the 18th and 13 on the 16th. I'm no expert, but I like to think if one measure jumps in the right direction, perhaps other numbers will piggyback on them.

That's the latest. We've been feeding Kathleen a couple times of late, so I can attest to the fact her appetite is healthy. I feel encouraged. More as we have it...

Love,
Brian

Some pretty awesome news

Hi everyone:

If I've learned anything about cancer from witnessing it in action, it's that you celebrate even the most modest of victories. To our delight (and, to be honest, our surprise), it seems Kathleen's hemoglobin and platelets both seem to be responding to the latest iteration of chemotherapy. Although at 8.7 for hemoglobin and 23 for antibodies she won't be the next poster child for perfect health, she does seem to be heading in the right direction. I, for one, think it's awesome.

Kathleen was waiting at our house when we got back from Canada; we'd missed her.

More soon...

Love,
Brian

Oh, there's a platelet. No, THERE. Wait, come back!!!

Hi everyone:

Yesterday, Patty and I took Kathleen to her oncologist's office to have her blood counts checked. Although her hemoglobin remained more-or-less stable at 8.2 (not at all great, but at least not plummeting), her platelets were down again, this time to 1,000 (normal is 140,000 and up). Her oncologist arranged for her to receive three units of platelets--one yesterday, two today.

After we waited 2-1/2 hours for the bags of platelets to arrive, nurses in the infusion clinic tried to pull a fast one: rather than stay three hours after their shifts were to end, they tried to admit Kathleen to the hospital on a 23-hour hospitalization to receive the platelets. Kathleen refused...and we applaud her for this. She's had plenty of days in hospital, and could well have plenty more, so who could blame her for saying no to an overnight based solely on others' convenience?

Early this morning, Kathleen and Patty headed out to the infusion clinic for the three rounds of platelets. Kathleen's oncologist is hoping our girl's bone marrow responds to the chemo and starts to produce platelets again. In the past, we've seen things appear bleak before taking a sudden turn toward optimism; let's hope this time will follow suit. As Kathleen's oncologist confirmed yesterday, this is all a bit of a beat-the-clock issue, because every moment with her platelets so low carries a real risk of internal bleeding. What's more, they need to get the platelets up so that in a couple of weeks they can give her more chemo, which will of course drive her platelets and hemoglobin down again. Crazy stuff, but Kiddo keeps rolling with all this...

Last night, Don, Sean, Sean's fiance Sam and Valerie (with a friend) came over to spend time with Kathleen. We've "stolen" her for a few nights because she needs constant supervision and support, something a teacher off for the summer (and her work-at-home hubby) can provide. Let's keep our fingers crossed Kathleen will soon be safe and able to bunk down in her own bed.

I'll catch you up again as soon as the gals provide an update.

Love,
Brian

Bad news then better news

Hi everyone:

From yesterday afternoon until mid-day today, our crew had been stuck in a bit of a slump, in large part because one of the oncologists on Kathleen's team (not her regular) suggested the only option going forward was to keep Kathleen in the hospital 24/7 with no prospects of ever leaving. Needless to say, this news sat poorly with all present, including the patient herself.

Kathleen's platelet count this morning sat at 3, which is both terrible and dangerous. Today, she received two rounds of platelets, which we suspect will not make much of a difference, even though we'll keep our fingers crossed.

The good news? In spite of the bad numbers, Kathleen's regular oncologist gave his blessing today for Kathleen to leave the hospital after her transfusions. Patty's waiting with her right now, and we're hopeful she'll be able to leave tonight around 8:30pm.

Going forward, Kathleen's doctor has ordered that she refrain from all physical labor, including cooking, cleaning, laundry and such, because an accident--or exertion, for that matter--could lead to dangerous bleeding, internal and/or external. As much as possible, she cannot be left alone, because a slip on the bathroom floor could be a nightmare. Tonight, Kathleen's going to stay at our house because Don needs to work in the morning.

Not all the news is good news today, but an escape from hospital is almost always a good thing.  Hopefully the newest chemo will kick in soon and turn the numbers around, because Kathleen is in no way eager to spend more time in a hospital bed.

Thanks to all for your best wishes, thoughts and prayers.

More when we have it...

Love,
Brian

Stuck...

Hi everyone:

Kathleen is still cooling her heels here at the hospital. In spite of what seems to be a never-ending flow of blood and platelets--and with more to come--Kathleen's blood counts continue to either (a) refuse to budge, or (b) budge in ways we don't want them to. This morning, her platelets are at 5 (still a real worry), and her hemoglobin is at 7.8 (up only 0.3 from yesterday).

The urine cultures taken the other day came back negative for any infection; although the blood results aren't back, we're pretty confident they too will come back clear. This isn't as good news as, "Where'd the cancer go?", but it's something, right?

When Patty and I arrived this morning, I chided Kathleen for not cooperating in making her numbers rebound, especially since I've established "rules" with her about bad blood counts in the past. I think she's planning to do better today, when she's scheduled to receive two more units of irradiated red blood cells and one unit of platelets. Kathleen is uneasy about the blood, because she's now had three unpleasant febrile reactions to transfusions, the latest while Don was visiting last night.

Kathleen seems to be in great spirits today, all things considered. She seems energetic and cheerful. She's expecting a ton of visitors today--siblings, in-laws, nieces, nephews and friends. We'll try to grab a few more photos. Kathleen's very hopeful that she might escape after her infusions today, although Patty and I are doubtful (and a little nervous, given that her numbers are so low). We'll all keep our fingers crossed that Kathleen responds to these latest rounds and earns her parole--if not today, then no later than tomorrow.

More info when we have it...

Love,
Brian

Some pics...

 Kathleen & Patty after a walk of the halls

  

 Kathleen and Cindy, one of her all-time favorite nurses

 

Kathleen and the best-looking guy in the hospital

 

 

Looking a bit serious...or wishing the camera would stop snapping at her

 

 Looking out, where she longs to be...

Stuck in the hospital

Hi everyone:

Sorry this update's taken a while. Patty and Kathleen were stuck in a signal-free zone (the E.R.) for much of the day yesterday, so I was picking up only fragments of details--fragments I was afraid to share lest I misinterpret them. I'm now here at the hospital with Patty, Kathleen, Joe, Amiee and Owen--and finally sorting through the chronology. I'm not sure I'll get this 100% right, but here goes...

After receiving three units of platelets on July 5th and two units of whole blood yesterday, Kathleen was given the go-ahead to leave the hospital's infusion clinic. Patty stopped at the oncologists' office on the way home to pick up meds for Kathleen, who waited in the car. When Patty returned, Kathleen was in tears from severe discomfort throughout her lower extremities and additional discomfort from a fever. She was feeling so poorly she asked Patty to get one of the nurses. The nurse followed Patty to the car, took one look at Kathleen and insisted she return to the hospital.

At the E.R., samples of Kathleen's blood were taken for CBC testing and for bacterial cultures, in case her fever was related to an infection. Initially, her oncologist suggested that, after a round of I.V. antibiotics, Kathleen could head home (in fact, he seemed a bit miffed that the nurses from his team were being so alarmist). Ultimately, the E.R. doctor conferred with Kathleen's oncologist and they decided to admit her. And here she remains...

So far, we've heard nothing back to suggest the fever yesterday (100.8 after heavy doses of both dilaudid and ibuprofen) was the result of an infection, although one oncologist expressed surprise Kathleen had such a strong reaction to infusions after having had so many. He suggested that many of the symptoms Kathleen's been enduring are a consequence of the triple-whammy of cancer, chemo, and sensitivity to blood antigens. More alarming was his suggestion that Kathleen has now become "transfusion dependent"--that is, her blood is no longer capable of bouncing back and she'll always require blood products to supplement her own. The biggest concern he expressed was that, even with bag after bag of platelets, her numbers are dipping so low she's at risk of "spontaneous bleeding inside the brain", words that immediately gave me goosebumps. Although he tried to paint a hopeful picture about leaving the hospital tomorrow, we have our doubts she'll be sent home until her numbers are less of a threat.

Okay, on to the numbers Kathleen's trying to walk around with; please don't attempt these at home:

Yesterday, after the three units of platelets and two of whole blood, Kathleen's numbers were mostly awful, and they're even worse today. Her hemoglobin yesterday was at 8.5 and today at 7.5; her platelets were at 7 yesterday and at 4 today. In fact, most every measure in her blood is down, including white and red cells.

All things considered, Kathleen seems relatively energetic and in good spirits, in spite of soreness throughout her hips, back and legs. The hospital's pain management team will be visiting soon. I suggested to Kathleen's doctor that they set Kathleen up with a pump for administering her pain meds, because she's needing it with greater frequency--and, much to Patty's irritation yesterday, nurses were eight hours late giving her doses of much-needed relief. Hopefully, we'll have a good answer on this soon.

As always, she's a tough gal and making the most of a terrible situation.

Love,
Brian

Long overdue update on Kathleen

Hi everyone:

My apologies for going so long without providing updates on Kathleen's condition. I had some problems with the login information for this blog, and was unable to sort out the bugs until recently. For much of the time, we've had little to share, other than that Kathleen's continued to receive chemo treatments that aren't doing the job. Each new treatment seems to do a yeoman's job of making Kathleen feel miserable but diddly-squat at improving her blood counts. Lately, her numbers have grown alarming.

As I write this, Kathleen is at the hospital receiving both platelets and whole blood. Since May, her platelets have fluctuated between a low of 8 to a high of 29; 140-440 is normal. This morning, her platelets hit an all-time low of 3, so low she's at risk of serious blood loss from even the smallest scrape, nick or bump. She's being treated by doctors as though she's a china doll, and that's not entirely inaccurate.

Kathleen's hemoglobin is at 8.4 (normal is 12-16); this is usually the number that concerns doctors (and us) more, because Kathleen is more symptomatic when her hemoglobin counts are down. Just to give an idea, her hemoglobin was at 6.8 a week or so ago, and tends to run in the 6-9 range as long as she's receiving frequent infusions of blood. Unfortunately, she seems to be needing these boosts more and more often.

Kathleen also lost three pounds suddenly about a week ago, even though her appetite has been decent. Fortunately, her weight hadn't dipped further this morning.

We're of course worried about all this--as is Kathleen--but we've seen her do some pretty amazing bounce-backs before...

I'll do my best to keep things more current around here moving forward...

Love,
Brian